Fighting sarcoidosis as well as other rare diseases.
Episodes
Monday Sep 12, 2022
Monday Sep 12, 2022
Sarc Fighter Laura Ward has been fighting sarcoidosis for three years. Her first inclination that something was wrong happened at Yankee stadium, when she had trouble walking up to her seat. Initial tests showed she had lymphoma. But upon further review, it was pulmonary sarcoidosis. That led to issues with prednisone and other life challenges that she shares in Episode 70 of the FSR Sarc Fighter podcast.
Show Notes
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
Kinevant
- www.kinevant.com
- www.sarcoidosistrial.com
- ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
- ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554
The New FSR Initiative
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Aug 29, 2022
Monday Aug 29, 2022
Kinevant Sciences is researching a potential new drug for sarcoidosis - namilumab – which inhibits one of the key proteins believed responsible for granuloma formation and persistence in sarcoidosis.
In Episode 69 of the FSR Sarc Fighter Podcast, Kinevant CEO Bill Gerhart and Director of Patient Advocacy, Rayne Rodgers discuss the status of namilumab, and how you as a sarcoidosis patient can participate in the Phase 2 clinical trial, RESOLVE-Lung.
Show Notes
- www.kinevant.com
- www.sarcoidosistrial.com
- Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
- ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
- ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554
Below is a transcript of the interview. It is auto-generated. Please excuse typos and misspellings.
John Carlin: Coming up on the Sarkfighter podcast, an exciting new potential treatment for Sarcoidosis.
Bill Gerhart: This particular protein is required for granuloma formation and persistence and that if we inhibit it, we can potentially make a significant difference in Sarkidosis.
John Carlin: The folks at Cotton are ah, researching a drug that is showing promise and shutting off the body's damaging response to the triggers of Sarcoidosis.
Bill Gerhart: So that's what I mean about a precision medicine and why we're so excited about the promise and potential of this particular drug for Sarcodosis.
John Carlin: That interview is coming up.
Bill Gerhart: This is the Sarkfighter Podcast, living with sarchoidosis and other rare diseases. Here's your host, John Carlin.
John Carlin: Hello and welcome to the Sarkfighter Podcast. I'm your host, John Carlin and this episode of the FSR. Sarcfighter podcast is brought to you by kind of antsciences sponsor of the Resolve long pulmonary sarcoidosis clinical trial. For more information, please visit www.sarcodosentrial.com. I do this podcast to offer my fellow shark fighters hope and to help you connect with other shark patients to hear their stories, understand how Sarcidosis affects their lives. Hopefully that helps you understand what you are up against and what you need to do to overcome whether it's the disease or the effects of the medicine or both. Before we jump into our interview today, I want to give you an opportunity to become a leader in the Sarcodosis community by sharing your story. A lot of people have done it here on the podcast, but FSR now is seeking dynamic, dedicated individuals impacted by Sarcodosis. To work alongside the newly launched FSR Global Sarcoidosis Clinic Alliance, volunteers would apply to become community outreach leaders. That's a new title. Who will share their Sarcodosis story with the public to empower others and raise awareness, or apply to be support group leaders, which would be a different category of leadership to facilitate inperson support group meetings at FSR Global Alliance Clinic alliance member locations. Applications are due September 30, which is coming up quickly, about a month from the day that I'm recording here in late August of 2022. Learn more by visiting the FSR website and there will be a link in the show notes, but it's www.stopsarcodosis.org gscaleaders. But another thing that we do here on the Sark Fighter podcast and these actually tend to be the most popular episodes, is talk to researchers and people in the pharmaceutical space about progress in fighting Sarcoidosis. Kind of spread that out, didn't I? Sarcoidosis, well, Sarcoidosis, you know what I mean. Today I have for you a solid dose of hope. The pharmaceutical company kind of Am is working on a drug called Namiliumab and if all goes well, you'll be hearing a lot about it in the coming months and hopefully longer. Now probably if it gets through all the trials and so forth, it'll change and it'll have a, uh, commercial name. And if all goes according to plan and this becomes a drug that's available to Sarcodosis patients and a lot has to happen before that could be the case. Namil You MAB will be known by something else. But in the meantime, let's just get kind of used to hearing that. It's N-A-M-M-I-L-U-M-A-B namel. Umab, okay. And I'll be talking with Bill Gerhardt. He is the CEO of kind of Aunt and also Rainy Rogers, she is the director of Patient Advocacy about how this drug, if it makes it through clinical trials and it's done well so far, can shut down sarcoidosis by switching off the trigger that creates the body's autoimmune response, which, instead of helping, actually damages tissues in our bodies. That's what we call fibrosis. And often that damage is irreparable. And of course, sarcidosis is the snowflake disease. It's different in every single person. Most of the time, like 90%. It happens in the lungs. Sometimes it happens in the heart. So you have cardiac sarcoidosis, and the last thing you want is permanent damage from fibrosis in your heart. But also, uh, in a very small number of cases, it can be in the, uh, neurological system. Like in my case, I have it on my spinal cord. It can be in your eyes. It could be in your spleen, it could be on your skin. We've talked about many, many of those cases here on the sarcfighter podcast. And no matter where it shows up, it's not good. So today we'll be talking primarily about sarcodosis in the lungs, also a little bit about cardiac sarcidosis, but how Amelia MAB looks to be promising in those cases. All right, now, as you know, sarcidosis is essentially granulomas. Noncaseating granulomas is the term that we hear and use that's basically small clumps of immune cells clustering in a part of your body where a signal has indicated that the body needs to defend against an invader of some kind. But there is no invader. There is no insult. But the granulomas come anyway. And instead of helping, they do damage. And if left unchecked, there are all kinds of issues that can happen. And that's basically the story with sarcoidosis. So today on the podcast, we'll be hearing how kind of ant is making steady progress so far with this new drug, Namilium App. All right, now, Bill Gerhardt is so good, the CEO, at breaking down how the drug works in layman's terms, in a way that you can understand. You'll hear him use an analogy where he talks about the tumbling of dominoes. And if you've never been able to figure out what's going on in your body when he starts talking about how the dominoes tumble, you'll start to really understand what's going on with sarcrodosis in your body and then how, uh, this new drug potentially could stop the dominoes from tumbling and by doing that in a very specific, highly targeted kind of way. Now, what I can tell you so far is that Namilia MAB has passed the phase one clinical trial. And the company is now recruiting people, including you, maybe for Phase Two. If that's successful, there will be Phase Three and then FDA approval. And we'll go over the timeline in the interview today. And as I mentioned a moment ago, you may have a role in this. There is a strong need for people to sign on for the trial, and Bill and Rainey will be sharing information about how you can do that. And I can tell you it is not just happening in the United States. So there will be opportunities for people all around the world to potentially participate in this. So maybe you're one of those people who are suffering the effects of prednisone, maybe long term exposure to prednisone, or you're dealing with methotrexate. And a lot of people's bodies don't react well to methotrexate. And, for instance, I know mine didn't, and you're tired of it. So maybe you're wondering where you would go to participate. How would you sign up for this? How would you just get more information about it? And all of that is coming up here on the FSR Stark Fighter Podcast.
Bill Gerhart: Uh.
Speaker C: M um.
John Carlin: Hi.
John Carlin: I hope you're enjoying the Stark fighter podcast.
John Carlin: You may be wondering, what can I do to help?
John Carlin: How can I be a part of the Sarquidosis solution?
John Carlin: It's simple.
John Carlin: Make a donation to Kicks, kick in to stop Sarcidosis.
John Carlin: 100% of the money goes to the.
John Carlin: Foundation for Sarcidosis Research.
John Carlin: Look for a link in the show.
John Carlin: Notes of the Sarfighter Podcast. A reminder from FSR. Over the past year, with generous support from the community, FSR has made incredible progress in efforts to accelerate Sarcodosis research and deliver responsive patient support. Programming spotlighting Sarcodosis to hashtag make it visible. FSR's 2022 update that provides an inside look at the incredible progress made in the last year, as well as upcoming initiatives in the Sarcoidosis world.
John Carlin: So if you want to know more.
John Carlin: About that, visit the FSR website and read the update and learn how your support can help stop Sarcoidosis.
John Carlin: Welcome back to the Sark Fighter Podcast. And joining me now is Bill Gerhardt. He is the CEO of kind of ant. And Randy Rogers. She is the Director of Patient Advocacy as well. Guys, thank you for joining me here on the podcast.
Bill Gerhart: It's great to be here, John.
John Carlin: Uh, yeah, we have a lot to talk about today and some exciting research which could have some fantastic results for people with Sarcoidosis. And Bill, I know you're going to be fielding a lot of these questions in the beginning, and then Rainy will get to you in a little bit when we start talking about the advocacy side of, uh, what you guys are doing at Kind of amp. But Bill, let me just throw it out there. You have a, uh, potential new treatment which is still in the research phase. But, uh, why don't you tell us what Namilia, uh, MAB is, please?
Bill Gerhart: Yeah, sure. Thanks, John. First, um, I'm, um, excited to be here on your podcast. I've been, uh, listening to you for a while now and feels like we're, uh, old friends. So it's a pleasure to be here and we're excited to talk about our drug candidate for, uh, sarcodosis and a clinical trial that we've initiated for pulmonary sarcodosis. Nameliumab is a next generation precision medicine. It's pronounced Nah milieu MAB. I know it's a mouthful, but after we say it 100 times, we get pretty good at it, right. Um, but eventually it will have a brand name. But that's a generic name for now. And to oversimplify, what nameliumab is it's? An antibody that inhibits a key cytokine, a type of protein that we believe contributes to the formation and persistence of granulomas. Antibody drugs are often referred to sometimes as biologics because it mimics M, a type of molecule that is found in our biology, in our body. Antibodies are normally produced by our body to fight diseases and infections. All of us have millions of them circulating within us. For example, most of us all now have antibodies that will attack the Cobid virus, either because we've been infected and or because we've been vaccinated. Antibody drugs are unfortunately expensive to manufacture, but they can be very powerful at precisely inhibiting the activity of a key target, a key protein involved in a disease. You know, uh, when a drug is a biologic, when it is administered either by infusion or injection influxamab or rimicate or Adolylmab or humera are examples of an antibody type drug that are biologic that some of your listeners may be familiar with. Another clue that the drug is an antibody is when the generic name ends in MAB, M-A-B like inflicts a MAB or Adolittle MAB, or in our case, Namilia MAB nameb inhibits a key protein that we think is involved in the formation and persistence of granulomans. Uh, the name of that particular protein is called granulocide macrophage colony stimulating factor, which is a mouthful. It's referred to as GMC SF, in short. But the important thing to know about this particular protein is that it's elevated in the blood, lung fluid and lung tissue of sarcoidosis patients. And the more severe the disease, the higher are, uh, the levels of this particular protein. More importantly, when GMCSF is genetically deleted in animal models, those animals are not able to form granulomas when challenged with a virus or bacterium. And when GMC s theft is overexpressed in animal models, the level of granulomas are significantly higher. So it's the combination of these samples from patients combined with these animal results that are a really good indicator that this particular protein is required for granuloma formation of persistence, and that if we inhibit it, we can potentially make a significant difference in sarcodosis.
John Carlin: Well, that is a lot of information, but, uh, it sounds it was a wonderful explanation, honestly, for what's going on in people's bodies. So you say you try to trigger the um reaction by what would you do? Like give them a ah, virus and see if you couldn't get that to trigger? And that's the evidence that suggests this is working.
Bill Gerhart: Yeah. Not to get too uh, scientific about it, but there are animal models that have been developed that form granulomas when challenged with a bacterium or a virus or a number of any other things that can result in the formation of granulomas. And so in these animal models to test a hypothesis you can actually genetically engineer the animals so that it doesn't express your protein of interest. And in the case where this particular protein that we're targeting Tmcsf, is missing those animals cannot form granulomas in response to that challenge. And more importantly, when we add higher levels of this protein to those animal studies when challenged, you see a significant increase in granuloma. So it's uh, not a guarantee, but it's a great sign that this approach could be effective for treating granuloma at its source. I mean sorry, treating sarcodosis at its source?
John Carlin: Well, it sounds extremely promising just on the face of it, as you've explained it.
Bill Gerhart: Well, we're certainly excited enough to invest uh, a very significant, uh, amount of money and uh, for the team to invest a significant um, percentage of their uh, adult working life to try to develop a new therapy for sarcodosis based on this uh early but uh, promising data that suggests that the drug will work once, uh, it gets into patients. I think maybe to better answer the question why do we think it will work? We need to briefly just traverse the ground that may be well understood by some of your listeners. We all, I think, know that sarcoidosis is an inflammatory disease characterized by the presence of granuloma believed to be formed by an exaggerated immune response to unidentified antigens. Granulomas are clumps of cells that surround an antigen. The purpose of granulomas is to wall off that antigen so that the body is protected from whatever that is. And what do we mean by an antigen? It's a foreign molecule or a molecule that the body thinks is foreign, like a virus or a bacterium, chemicals or maybe dust even or maybe even a protein in the body. Like a fragment of DNA that the body doesn't recognize. And normally the body can clear these granulomas without assistance. But in sarcodosis, those granulomas persist, sometimes leading to inflammation that when unsuccessful at clearing the granulomas, persist. Uh, and it's that chronic inflammation that mostly leads to the symptoms. Patients experience compromised organ function and in some cases scarring or fibrosis of the tissue which can lead to even organ failure. And as you know, and as uh, most of your listeners know, nobody knows for sure why some people get this disease. It's likely due to some genetic predisposition where the immune system doesn't quite work right when a foreign molecule is detected similar to why some people get cancer when exposed to certain environmental exposures. Why is this important to understand for this particular drug? Uh, well, short of understanding what genes are causing the initial dysfunctional immune response and because scientists don't historically know what is actually causing these granulomas to form the best pharmaceutical approaches to treating this disease historically have been broadly acting anti inflammatory or immune suppressive therapies like pregnancy or method. But what we're doing is taking a more precise approach, a, uh, more targeted approach to the specific thing that's happening in sarcodosis based on a better understanding of what's going on. All biological processes have what are called pathways. When one thing happens, a cascade of biological events occur leading to, in this case, an inappropriate immune response to an antigen that fails to resolve on its own. Think of a biological process as a row of dominoes that fall over one after another after the first one is knocked over eventually leading to the last domino falling over. As we better understand what those pathways look like for sarcodosis we can develop new drugs that target a specific step in that pathway, a specific protein in that pathway or, if you like, a specific domino. In my example, that when inhibited, stops the process from occurring stops the formation and persistence of granulomas and or better enables the body's immune system to get rid of the granulomas. If we can prevent or reduce the formation and persistence of granulomas we can prevent or reduce the resulting chronic inflammation that leads to all of the problems that patients are experiencing. And if we can do that with a drug that is safe, well tolerated and conveniently administered then that would be a home run for, uh, patients with this disease. Think of it as a precision medicine. We're not developing a drug with broad anti inflammatory properties like prednisone, which works in the short term. It causes all kinds of problems if patients are unable to taper off after one or two courses. And we're not talking about a drug like methotrexate, which broadly suppresses the immune system, which sometimes works, but it's slow to act and has significant side effects for a lot of people that take it. In my Domino's example, these types of medicines don't knock over just one domino in one pathway. They knock over multiple dominoes and multiple pathways a sledgehammer, if you will, instead of, um, a scalpel leaving not only some, um, efficacy in circuit doses, but sometimes also to a lot of other unintended effects, side effects. So that's what I mean about a precision medicine and why we're so excited about the promise and potential of this particular drug for sarcoidosis.
John Carlin: And why sarcoidosis? We've got about 200,000 sarcoidosis patients in the United States and over a million that we know of in the world. Convenient, uh, is focusing on an orphan disease. Can you kind of give us some idea of why you decided to work on circuitosis.
Bill Gerhart: Yeah, that's a great question. Maybe to answer that question, I can tell you first a little bit about myself and then a little bit about the philosophy and the focus of our company. Um, my background is primarily as the CEO and founder of, uh, bio pharma companies, mostly here in San Diego where I live. So I'm somewhat of a serial entrepreneur, having started a half a dozen companies in my career. By the way, biopharmic can mean different things to different people, but in my case, it means drug development. In other words, designing and executing clinical trials in order to prove that a drug is safe and effective and deserves to be FDA approved and made available to patients. I started a company and helped develop a new medicine for cystic fibrosis, which is a rare disease I helped start, uh, and was the CEO of a company that developed a new medicine for chronic obstructive pulmonary disease, which is the number three cause of mortality in the world. And I was the CEO and founder of a company that was developing a drug for idiopathic pulmonary fibrosis, which is a deadly respiratory disease. But in that case, um, that program failed, which sometimes happens in our industry. Uh, we were in the middle of recruiting for that study when the pandemic hit, and we had to stop recruitment, like a lot of companies. And we tried to finish with the data that we had, and unfortunately, the data wasn't positive enough for us to continue forward. So that's kind of a little bit about my history. And at this point in my career, I'm passionate about working on new treatments for diseases that have few or no good treatment options. Serious diseases with significant unmet needs. And those tend to be rare diseases, which is arbitrarily defined as less than 200,000 in the US. And they frequently have no therapies approved. And I've been looking at Sarcodosis for maybe close to 15 years, but just never found the right approach, um, that I thought would be, um, uh, successful. Um, and the conviction rate has to be pretty high, given what's at stake when you actually go down this path to develop a new drug. So, kind of Ant was formed to specifically focus on inflammation and autoimmune rare diseases. And our first and currently only program is targeting Sarcodosis. Unlike a lot of other developers who start with a drug and look for a disease to treat, our philosophy is to first start with the problem, the disease, and work backwards to identify and eventually develop a drug that we think will most effectively treat that problem. So when you ask the question, Why Sarcoidosis? It's because of all of the different rare diseases that we've been looking at. We think we've got an approach that we have a lot of confidence in, that we think it's going to work. And once you have that conviction, then there's obviously a moral, um, obligation and a business obligation to go try to make that happen. Influenb remicade or adolyma. Pimera are examples of drugs that have been developed for other diseases and they have sort of been repurposed for treating sarcodosis, but they weren't designed or developed to treat specifically sarcoidosis. Not specifically proven effective and approved by the FDA for sarcodosis, but better than no option for sure, other than antiinflammatory or immunosuppressant drugs like Pride Zone or Methotrexate. The advantage of our approach is that we believe it significantly increases our probability of success, the success of the therapy, both in terms of efficacy and in terms of tolerability and safety. A lot about sarcodosis, not well understood. That's just one of the many things that makes it challenging to develop a new therapy for this disease. However, our, uh, growing knowledge and what biological processes cause the disease, and based on our insights on how we can interrupt those processes that lead to this disease with a new therapy, gives us, um, a lot of hope and a lot of excitement about the potential to treat this disease at its source more effectively than what's currently available. So that's our approach generally, and that's our approach specifically for sarcodosis.
John Carlin: Well, um, just speaking on behalf of the sarcodosis community, thank you for choosing sarcodosis to focus on. Um, as you mentioned, there are no on label drugs right now for sarcodosis that are specifically developed for sarcoidosis. So, um, as we look at your research opportunity here, uh, let's hope that it moves forward in a positive direction the way that it seems to be with what you've been able to establish so far. So thank you for that. Um, let me ask you the next question. So you have started now, uh, as we talk about your research, you, um, have started something called the Resolve lung study. Please tell us what that is.
Bill Gerhart: Uh, sure, yeah, no excited to talk about our clinical trial and in fact, we actually have initiated two clinical trials, John. We've initiated a smaller study and cardiac sarcidosis that we refer to as resolve heart, and a larger trial in pulmonary sarcastosis, which we refer to as resolve lung, which we'll mostly discuss here today. And the resolve lung clinical trial is a traditional randomized doubleblind placebocontrolled trial, that is a phase two trial, which is many of our listeners know as a result of listening to other speakers on your podcast, is sort of the middle of the process, if you will, to a drug being approved by the FDA. Phase one is mostly safety. Phase two is efficacy and safety in a smaller number of patients. Phase three is safety and efficacy in a larger number of patients. In our particular case, we've actually designed a pretty significant phase two study. It's a twoarm study. One arm would have, ah, randomized to placebo. The second arm would be randomized to our drug mailing map. It's 100 patients total 50 patients in each arm. Um, and for patients, it would be a one year commitment with monthly clinical visits. And the one year is broken into two periods. The first six months is the randomized, double blind, placebo controlled part of the trial. But at the end of the six months, all patients in the trial will roll over and be in what we call an open label extension. Which means regardless if you were on placebo or active in the first six months of the study, you will be on the therapy in the second six months of the study. So everybody in the clinical trial will eventually get the drug, either in the beginning or in the middle of the trial. The trial, like other pulmonary sarcodosis studies, is designed to measure improvements in lung function and in quality of life, ability to taper off of steroids or other immunosuppressive, therapies changes and improvements in fatigue and other important assessments of effectiveness for patients. Um, patients eligible for the study are broadly patients that are not well controlled on currently available therapies, either because they're on doses of prednisone and methotrexate and they still have symptoms and they're still sick and they still have a poor quality of life, or they've tried to use levels of those drugs that are effective but aren't able to tolerate the side effects. So we hopefully are targeting patients who are of the highest need, who would normally be patients that would be candidates for biologic, um, in order to best demonstrate the potential of the drug. It's a big study, uh, in terms of footprint up to 50 clinical trial sites in seven different countries in the US. As well as the UK and the EU.
John Carlin: So you right now, are in phase two. Are you actively recruiting, you're looking for those patients right now?
Bill Gerhart: We are. We've, uh, just recently opened our first clinical trial sites in the US. And we're starting to screen patients for both studies. And we hope to actually enroll our first patient here in the very near future. Or maybe by the time your listeners, uh, hear this podcast, we will have enrolled our first patient, which would be a huge, exciting moment, uh, for the company, because to get to this point took years, uh, and a significant amount of work by a lot of people at our company in order to get to that point. It's not the end, obviously, because we have to then finish recruitment and, uh, lay the groundwork for the next part of the clinical programs. Everybody will be working forward, but it will definitely be a cause of celebration around our company.
John Carlin: So I want to ask you in just a moment where, um, these, uh, centers are that are offering the trial, because I assume there's some sort of geographic tie for people who may want to, but you can only travel just so far, go to the doctor often enough to make this work. Um, but I just want to get a time marker in here. You're listening to the Sark Fighter podcast, and we are talking with Bill Gerhardt, who is the CEO of kind of Ant, and we'll be hearing from Randy Rogers, the director of Patient Advocacy, here in just a moment. But we are recording, uh, in late August of 2020, uh, two. And just so if you are listening, because a lot of people do go back and listen to episodes in the future, uh, I want to make sure that if you're hearing this and you might be interested, that you kind of have a time marker. So that's what I'm doing. Um, so, Bill, let me get back to ask you, first of all, where, uh, is the research taking place and how long will you be recruiting patients for the study?
Bill Gerhart: Yeah, that's a good question. Um, I'll let Rainy give more information about how patients can find a clinical trial center in the area that they live, um, because we are opening up 20 to 25 sites in the US. It's a little bit of a long list to read off here, but our goal was to have a clinical trial site in every major city so that the majority of patients would have access, uh, to the, uh, drug. And of course, if they need to travel, we will provide, in many cases, assistance so that motivated and interested patients, uh, who potentially qualify the trial can participate.
John Carlin: All right. Uh, because it does disrupt people's lives, uh, to have to go back to the doctor that often, uh, especially if they don't feel that they need to. But on the other hand, uh, the therapy that you are investigating here sounds so promising that I would hope people listening to this, if they qualify, uh, would certainly try to step up. And the other thing that you mentioned, which is different than anything we've talked about on the podcast before, is so you have a placebo where somebody gets essentially a pill that looks like the treatment, and then you have another group that gets the actual treatment. But after six months, I heard you say everybody gets the treatment, which is an interesting take, I know.
Bill Gerhart: Uh, it's included in the study design for two reasons. The first is that it gives us more information about the drug when we can look, for example, at those patients that have been on the therapy for a total of twelve months. And just as importantly, it gives us important information about the drug when we follow patients who have been on placebo for six months, and then they switch over to the, uh, draw for the second six months, and we can see within one patient the difference in outcomes. And that is really valuable information. So that's one reason why we do it. And obviously, the second reason why we do it is because oftentimes patients are reluctant to participate in clinical. Trials because they don't want to take the risk of being in the placebo arm. And unfortunately, and you know this well from other speakers that you've had on the podcast in order to definitively determine if the dropd is safe and effective you have to compare it against a cohort of patients that are identical to the ones that have the drug who are on placebo so that you can make those comparisons. If you can't do that, then scientifically you really can't conclude if the drug is safe and effective. So that's a necessary part of drug development. But by adding this open label extension, we can say to patients if you participate in the study, you take the time and the inconvenience of participating in the study, then this is another reason to participate. And we've really worked hard to try to make it as easy as possible for patients to participate in this clinical trial. First, by opening up as many clinical trial sites as we can to make sure that, uh, the, uh, a center is, uh, nearby a patient who's interested and qualified. Second, we design, uh, the criteria, unlike other studies so that you don't have to be on a high dose of steroids to get in the study. If you are on a high dose of steroid and you want to try to get off, then you can participate in the study. And part of the study design will be to taper you down in, uh, the study. But if you're not on a high dose of steroid, you can still get in the study because we would just keep you at whatever level that you're at now. So you cannot be on a steroid at all and still get into the study. And we think that's a big advantage for a lot of people who traditionally have been excluded from clinical trials. Treatment practices are changing, and people are on high doses of steroids less and less as time goes by. And clinicians and patients are more aggressive about trying to find other options other than staying on high doses because of all of the side effects. So we think that that will be appealing. And then the other thing, uh, that's important to know about this drug is that it's not the first time that it's being evaluated in patients who have a significant disease. This drug has been in more than 300 patients, uh, sometimes up to six months or longer. And so far, we have not seen any safety or even side effects associated with the drug. So we can't be positive in what will happen in sarcosis. But, um, our belief is that the drug will continue to be safe and well tolerated. So oftentimes you hear patients say that they don't want to be a guinea pig and that's the reason for not participating in a clinical trial. But in this case, that shouldn't, uh, be a concern. And patients who, uh, are willing to participate in this trial can participate, uh, with that extra level of confidence and awareness. And then finally, the other thing that makes this drug different than other drugs that have been evaluated for Sarcoidosis, it's a sub queue injection. It's not an infusion. It's not a 1 hour fusion. You don't have to go to a clinic and sit in a chair for an hour. It's a convenient once a month injection that you can get at the clinic or in some centers that are participating in this clinical trial. A mobile nurse come to your home in order to do the assessments and to give you the injection. So we've tried to make it, um, as convenient as possible for patients who are interested in participating in this study to do so.
John Carlin: Very good. Um, I want to just ask you, so you're recruiting now. When do you think and it's a year long process, so when do you think you'll have the results of your phase two and be ready to go into a larger testing in phase three, and assuming that everything progresses as you hope, as we all hope, when, uh, might this be available to patients if everything just tracks according to plan?
Bill Gerhart: Yeah, good question. And I like your caveat at the end, because, um, um, um, often plans don't go as well as you hope, but in this case, our plan is to finish recruitment sometime in the first half of next year, which means that we will get our top line results in the first half of 2024. And in anticipation of positive results from one or both of the clinical trials that we're conducting in Sarcidosis, we are already investing in manufacturing for the phase three part of the program. One of the unique artifacts about developing, uh, particularly a biologic for a disease, is that you have to manufacture your phase three drug product in the same facility on the same conditions as what you would launch and go to market with. Um, if you don't do that, then you take on a lot of unnecessary risk and you potentially delay the drug's approval, uh, and entry into the market. So companies like ours not only are making a significant investment in the clinical trial, but we're making a significant investment in parallel with all of the manufacturing and, um, other requirements to initiate a phase three study so that we can roll into that phase three study in a very short period of time after we get our results from this study.
John Carlin: Excellent. You're listening to the FSR Sark Fighter podcast. And today we are talking with some folks at kind of a who are working on a potential new therapy, let's call it a research opportunity for Sarcoidosis. And I want to bring in Rainy Rogers, who is the director of patient advocacy.
Bill Gerhart: First.
John Carlin: Uh of all rainy welcome. Uh, you've been sitting here graciously, and we haven't heard from you much yet. So, uh, officially, welcome to the podcast.
Rayne Rodgers: Thanks so much, John. Um, the first time I met you, I felt like I was meeting a celebrity. I've listened to so much of, uh, your podcast over the last eight or nine months. So thank you so much for having us. Bill and I are thrilled to be here.
John Carlin: Sure. Uh, I'll tell you what, I'll bring it right up to San Diego as soon as the weather gets cold here in Virginia. How's that sound?
Bill Gerhart: You got a place to stay?
John Carlin: Beautiful. Um, but Randy, I, uh, know that you guys are working with FSR. Can you talk a little bit about that relationship?
Rayne Rodgers: Absolutely. So, um, I'm the Director of Patient Advocacy at Canada, as John mentioned, and really, I wear a number of hats. So my background is in rare disease research, both for pharmaceutical companies as well as for patient foundations like FSR. Um, I actually worked for the Muscular Dystrophy Association and really, uh, here at Kanye, and I'm responsible for a number of different things. So helping to design clinical trials that are easy for people to participate in, making sure that all geographical areas are accommodated for and represented in research, and ensuring ultimately that the patient voice is reflected in everything that we do. So I spend a lot of time listening and a lot of time doing research, um, in partnership, uh, with groups like FSR. So kind of antiserid to be partnering with FSR, as well as a number of, uh, other smaller organizations that are, uh, international as well, that focus in Sarcudosis. We are partnered with FSR on a number of exciting initiatives. So I'll just highlight a few. Uh. So I joke with Bill. I could talk about advocacy all day. But I'll just give some highlights and some color into what we're doing with FSR m ultimately. We feel so lucky as researchers to have FSR as a partner for us to be able to really truly understand what's important to patients and to bounce ideas off of each other as we continue with our phase two research of Namibia Map. So we are part of the Corporate Advisory committee with FSR. We also recently, just last month, many of your listeners may have attended the Global Virtual Patient Summit. We were, um, really excited to represent, uh, our research there. We had a virtual booth. We, uh, had a live chat feature and interacted with people living with Sarcoidosis all over the globe. Had a lot of really great conversations. Uh, there. We had on our booth information about the trial as well. Um, another piece I want to highlight is we're a proud sponsor of the African American Women in Sarcodosis campaign. And that campaign really, uh, is pursuing how to best encourage African American women to participate in research, understanding the barriers to that population, and, uh, making rapid change to enable those populations to have access to these types of opportunities, especially for these ethnic groups that are historically underrepresented in research. Participating in clinical trials is so important because it really helps to ensure that the trial results better reflect both the effectiveness and safety of the drug, but across all patients or all people living with Sarquidosis. So, just a few highlights with FSR, but I'm thrilled to be partnered with them.
John Carlin: Yeah, well, of course. And you just mentioned the African American Women Initiative, uh, which, if people are listening to this podcast for the first time, may not be familiar with that program, but essentially you have a population, uh, when we look at the data that is most, uh, likely to suffer the effects of Sarcodosis and least likely to access effective treatment. And so that's one of the reasons why FSR is trying to, uh, make it easier for that group of people to get the treatment they need and to really kind of focus attention on a group that badly needs it. And so kind of ant is stepping in. And you're one of the sponsors of that program, so congratulations to you on that. I think that's outstanding advocacy. But when we look at, uh, Namib, if people want to get involved with this, and I know that there is a website that is probably available, um, through your website, but that information is also being distributed by FSR, is it not?
Rayne Rodgers: It is, yes. We have developed so we do have our kind of a website, but we've developed a study specific website that is for patients. It's for people that are living with Sarkoidosis who are looking for information about the drug, about the trial, um, you know, where these trial sites are and the ability to ask more questions. So that website, uh, and hopefully we can link it in the show notes. John, if they've seen you do that website is www.starkoidosistrial.com. So super easy to remember. Um, all the information is there. Also, Bill had mentioned study sites, that we have 26 sites in the United States. Um, and we have a total of, uh, approximately 50 sites globally. So we have seven countries, including the United States, that are participating. Um, some of the sites are active. Now, as Bill had mentioned, we're thrilled to have sites actively enrolling, and some of our sites are still in startup.
John Carlin: I know you're actively working with all of these sites right now. Uh, and again, we are speaking in late August of 2022. So if someone is listening to this, when do you think that that will be firmed up completely and that you'll have all your sites lined up and ready to go and to accept patients that might be willing to do this?
Rayne Rodgers: Yeah, absolutely. So it's on a rolling basis. Um, every week we have new sites activating. We're hoping to get all of our sites active here in the next couple of months, uh, specifically in the US. Probably sooner. Um, that link Sarquidosischrial.com, it's going to be updated in real time, so as soon as a new site is active, that site is going to be listed there.
John Carlin: I just want to touch back quickly because Bill, earlier in the podcast is mentioned, there's actually two studies happening here. There's. Resolve heart and resolve lung. As we look at the potential safety and effectiveness of Amelia Map, um, are we talking primarily about lung patients here, or if you heard the word heart and you're a cardiac patient, how would you react to the information we're sharing right now?
Rayne Rodgers: You're right. What we've been talking about with the 50 sites and, uh, international and all that, that is specific to the Resolve Lung Study. The, uh, Resolve Heart Study is in the United States, and we do have information on, uh, our website for that study as well, in terms of how to find more information.
John Carlin: All right, and what level of sarcidosis are you looking for? Are you looking for a patient who's just been diagnosed or for somebody who's been suffering for multiple years or all of the above?
Rayne Rodgers: Sure. Um, so there's a short list of criteria on the website. I'll highlight just a couple of points. Um, so, 18 years or older, diagnosed with sarcoidosis for at least six months, completed a COVID-19 vaccination. I think the fourth one listed there is, um, just around steroid use. And, um, Bill had mentioned this earlier, but willing, uh, to either taper down or stay on a stable dose or no requirement for steroids as well. So, yeah, those criteria. A couple of things there are listed on the website.
John Carlin: All right, outstanding. Um, so, Rainy, is there anything else that you wanted to add in terms of patient advocacy and making kind of ant, uh, making sure that the psychedosis patients are being heard, or anything else you want to add along those lines?
Rayne Rodgers: Absolutely. Uh, just a couple closing statements for me. I mean, ultimately, I just want to really stress how much time our team has spent really considering and trying to understand what's important, not to rare disease patients, but to people living with sarquidosis, um, and what it would take for them to, uh, consider partnering with a company like kind of Ant for research, uh, with Mammalia Map in both pulmonary and cardiac sarcidosis. We've tried to think outside the box to make the trial more accessible. So some of the things Bill had mentioned, we have, um, transportation assistance and, uh, travel reimbursement to study visits. We know that these visits can be, uh, time consuming and potentially financially burdensome. Um, so really trying to, um, cover those costs there ultimately the fact that Namiliamab is an injection and not an infusion, which will reduce, uh, the time needed to participate in a research project such as ours, and the offering of home and televisits. So if a patient is working, um, they need an evening home visit for their objection. This month, they're traveling, they're taking care of a loved one there's so many things that happen on a day to day basis. Really trying to make sure that we're addressing those potential concerns and offering, um, the flexibility and the, uh, resources there so that all patients that are interested have an opportunity to participate. Not just, uh, someone who's living in a close to a big city and potentially retired. And, um, we understand that the Sarquodosis community is very complex and that there's a lot of different, um, things that are important. So really trying to cover all those basis.
John Carlin: Well, the fact that it's a shot is fantastic. I've been through the whole thing at the infusion center with Remicade, and it is very time consuming. You have to build your life around it. There's no other way around it. Um, and now, uh, I've transferred to, um, Humera, and that's a shot that I give myself at home, which is so much easier. And in terms of participating in this study, uh, that's just something that it's that hour of your life that you get back once you get there and go through the waiting room and all the other stuff that happens when you're at the doctor's office. Well, Randy, uh, thank you. And I, uh, want to bring in CEO Bill Your Heart again, uh, at kind of a bill. Do you have some closing thoughts or anything else that you would want to add to our conversation?
Bill Gerhart: Drug development is hard. Most people in the world have a negative impression of pharmaceutical companies, usually because of the high prices charge for drugs, which makes them less accessible to many. I understand that. But the reality is that most drugs are initially discovered and developed by small companies like ours, staffed with people who take huge career risks and investors who risk significant amounts of money to work on just one program or one disease. It takes a hurricane, uh, effort and a lot of courage to nurture a drug candidacy from infancy to improve an entity that's available to patients. Most, as you know, fail along the way. Many of us have nothing to show for the effort after dedicating three to four Five years Longer of Our Livesto program. And a good example was the program that I worked on at IPF, which was five years of our lives and $100 million of invested capital with nothing to show for it. At kind of end, I'm, um, privileged to lead a small team of very dedicated individuals who wake up every morning thinking about nothing but the huge responsibility we have to successfully conduct these clinical trials and develop a new therapy for those with sarcosis, many of whom desperately need a more effective and well tolerated therapy to treat their disease. For us, it's now a mission and a cause that consumes 80% of our waking minutes. We are completely energized by the potential to make a significant difference in the lives of patients that are suffering from Psychnosis. Having spoken to many of them over the last couple of years. We deeply understand the challenges experienced by people with this disease. It's challenging to diagnose, challenging to find the optimal treatment regimen. It has a significant impact on quality of life, and the existing treatment options can be pretty crummy. So here's my call of action here's my call to action from your listeners. Nobody is pleased with the currently available therapies for sarcodosis. But in order to develop new therapies that make a significant difference in this disease, it does take a village. It takes dedicated biopharma or pharmaceutical companies that are willing and able to make the investment in r amp D for an orphan disease for a small number of patients, relatively speaking. But more than this, it takes clinicians who treat this disease to be willing and enthusiastic about participating in clinical research. If they're not willing and enthusiastic about participating in clinical research, we can't evaluate and get new therapies to patients. And patients have to be willing to participate in clinical trials. If you don't have clinicians and patients willing to participate in clinical trials, we can't invest in developing and evaluating new candidates for this disease. I mentioned earlier that biologic drugs are expensive to manufacture. But the biggest drive of cost, the biggest driver of cost, and thus the biggest driver of high prices for drugs for rare disease, is a huge cost to conduct a clinical trial like the one we have initiated for sarcidosis. And statistically, less than 5% of those with the disease are willing to participate in a clinical trial. If it's a large disease, that's not a problem, but if it's a rare disease, that's a big problem. It's been estimated that only 1% of sarcodosis patients who would qualify for a clinical trial would choose to participate in a clinical trial. 1%. It's risky to try to develop a drug for sarcodosis because we don't know what really causes the disease and we don't really know what's required to get the drug approved by the FDA. But on top of those risks, there's that significant cost to recruit and enroll a clinical trial, because it's so hard to find patients that are willing and interested to participate. If the percentage of patients just doubled from 1% to 2%, that would make a huge difference. The more patients who participate in clinical trials, the lower the cost to conduct clinical research for psychedosis, and the more motivated companies would be willing to develop new therapies for this disease. Forget about our company and our disease. I want to just make that pitch for the community of people who have this disease. It's important for people to have that awareness and to know that their participation is important in order for the treatments, for their disease to be developed and for their lives to improve, not just for them, but for successive generations of people that might have this disease. Other pharma companies are watching to see what our experience is and the experience of other companies conducting clinical research in Sarcodosis, can we successfully conduct a large study in sarcidosis? So this is a call to action. If you are clinician who treats Sarcidosis patients, sponsor a clinical trial so that your patients who are interested in qualified can participate. If you're a patient, please ask your clinician about the opportunity to participate in a clinical trial. Yes, it does involve some risk and some, um, inconvenience, but companies like ours need you to partner with us to conduct clinical research in order to develop new therapies that better treat and may eventually cure the disease that affects you and future generations of people with this disease. Without your participation, we can't do it. Help us help you.
John Carlin: Outstanding. That's a fantastic call to action. And, uh, I had never heard these statistics before. The 5%, generally 1% of Sark patients, and you start doing the math, and that doesn't leave you with many patients, potentially, when you look at the United States. Fortunately, the podcast does have a worldwide reach. So hopefully, if somebody's listening in Australia or UK or, um, wherever in Europe, uh, maybe that will help you get this done that much more quickly. So, uh, let's hope that that works out. So, we have been talking with, uh, two folks from kind event CEO bill gerhardt and randy rogers, who is the director of patient advocacy. Guys, thank you so much for what you're doing and for joining me here on the FSR Stark Fighter podcast.
Bill Gerhart: Thanks for the opportunity to share a bit about our company and, uh, the potential for this trial. John, we really appreciate it and thanks for all that you do for the community. It's really inspiring.
Speaker C: Um.
John Carlin: We covered a lot of ground in this interview, but there are some takeaways as you listen to the FSR SARC Fighter podcast. Let me hit the bullet points for you. Kind of Ant is the pharma company. They have a potential new drug to fight Sarcodosis called Namiliumab. It's passed phase one testing. Now entering phase two. It's shown so far that it is safe and has few side effects in 300 patients. And the hope is that further testing will prove that it will suppress the inflammation associated with Sarcoidosis and therefore significantly improve patients quality of life. They are working with various centers right now to get the ball rolling. They need you to participate. And this test is interesting in that eventually, even people who get the placebo initially will eventually receive the treatment from, uh, Namib. I'm working very hard to make that just roll off my tongue. I'm getting better at it. Namilumab. Okay. FSR is partnering with Kind of Ant to help spread the word about the trial. And you can get more information in the Show Notes on Kind of Ant's website and the FSR website.
John Carlin: And, uh, as I said, as well.
John Carlin: As the Show Notes here. Now I can tell you that it costs hundreds of millions of dollars to bring a drug like this through research and testing and then to the market. And let me just say that I, for one, m am glad that those resources, and let's face it, that risk, that financial risk, is being focused on Sarcoidosis, which is classified as a rare disease with fewer than 2000 patients in the United States. There are many, many of these orphan diseases. And it is gratifying that people like Bill Gerhardt and Rainey uh, uh, at kind of ant have decided that Sarcoidosis is where they want to put their focus. And then they're making progress, right? They're making progress. So thank you to Bill and Rainy for joining me here today on the FSR Sark Fighter Podcast. Reminder, uh, the official Sark Fighter song is called Zombie by Mark Styer, and he plays in a band called the White Hot Lizards in Alberta, Canada. Mark is a fellow SARC fighter. The story behind the lyrics is way back in episode twelve, but whenever you hear little bits of that song here on the podcast, you're hearing part of the song Zombie Reduce. Uh, I normally release a podcast every other Monday. As I'm speaking today, my trusty dog Google, my rescue boxer, is curled up on the chair in my office. Google makes my life so much better and I just have to share that with you. Please don't forget to follow me on social media. I'm on Facebook. Just search for Sarkfighter. Also Instagram if you happen to ride Peloton, you hear me talk a lot about Bicycling. I'm on Peloton as Sark Fighter and I do have a cycling blog, Carl and the Cyclist, which has a section called Cycling with Sarcoidosis. Also, if you are new here and you're just trying to figure out what Sarcoidosis is, try listening to episode one. But, uh, actually episode two with Dr. Simon Hart. It is one of the most listened to episodes. My story is episode one. And the backstory to the founding of the foundation for Sarcodosis Research is episode eleven with Andrea and Reading Wilson who started the foundation at their kitchen table. If you would like to tell me something about the podcast, if maybe you'd like to be a guest on the podcast, if you want to, uh, alert me or, uh, let me know about something that's happening, please email me. Carlinagency@gmail.com, uh, that link is in the Show Notes. And if you just want to comment on the podcast, I certainly welcome your comments. So once again, follow me on social media. Please take a link and just help share the podcast, get it out there in the Sarcodosis community using your social media, because I do appreciate your interest. And the more people who listen, the more we can grow this community and the more it can help. So, if nothing else, if you really like the podcast, just tell one person. I certainly appreciate it. Until next time. Keep fighting.
Monday Aug 15, 2022
Monday Aug 15, 2022
A retired businessman had everything, until doctors told him he had only weeks to live. It was cancer, not Sarcoidosis. But this man began posting profound thoughts on a forum. I have met him and talked about his success in business. I have an amazing amount of respect for what he's accomplished personally as well as professionally. So when I read his posts I saw pearls of wisdom that apply to those of us fighting sarcoidosis. I wanted to share some of those thoughts today on the podcast.
Show Notes
Want to learn more about the clinical trial for efzofitimod? https://atyrpharma.com/patients/clinical-trials/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
The New FSR Initiative
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Aug 01, 2022
Monday Aug 01, 2022
Sarcoidosis patient Kristi Hedge is just beginning her journey with Sarcoidosis. Listen in as she details how she started feeling poorly. After multiple doctor visits they discovered she had a serious case with Sarc involvement in multiple organs.
Show Notes
All about the Summit: https://www.stopsarcoidosis.org/summit-2022/
Contact Mindy: mindy@stopsarcoidosis.org
How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/
Want to learn more about the clinical trial for efzofitimod? https://atyrpharma.com/patients/clinical-trials/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
The New FSR Initiative
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Jul 18, 2022
Monday Jul 18, 2022
Every year the Foundation for Sarcoidosis Research presents a summit, where leading experts, patients and caregivers can gather to discuss what's going on with our illness. It's also a time to learn more about the latest research and to just be with others who get it. The summit is virtual this year, so you will join on line, but you still get to visit the Exhibit Hall, the plenary sessions, and have Q and A with doctors, researchers and the pharmaceutical companies which are now lining up with exciting research.
In this episode of the Sarc Fighter Podcast, the FSR Director of Patient Programs, Mindy Buchanan joins me to talk about the highlights of the summit, how you can sign up and how to participate at no cost if you are unable to pay the fee. Mindy is truly excited about all the summit has to offer, and she will share that enthusiasm during the podcast.
Show Notes
All about the Summit: https://www.stopsarcoidosis.org/summit-2022/
Contact Mindy: mindy@stopsarcoidosis.org
How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/
Want to learn more about the clinical trial for efzofitimod? https://atyrpharma.com/patients/clinical-trials/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
The New FSR Initiative
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Jul 11, 2022
Monday Jul 11, 2022
aTyr Pharma is launching a new clinical trial for a drug called Efzofitimod, which has thus far shown significant promise as a drug that reduces dependence on prednisone for pulmonary sarcoidosis patients. In addition, the drug has also produced positive results in helping patients improve their overall condition and quality of life. In this episode of the Sarc Fighter Podcast, aTyr CEO Dr. Sanjay Shukla joins me to talk about testing to date, and to announce what could be the final stretch of testing and analysis before Efofitimod reaches FDA approval, and would then be available to treat sarcoidosis patients.
Will this be the first significant breakthrough in 20 years? Listen in as Dr. Shulka walks us through the successes so far and what must still happen for Efzofitimod to become available for patients.
Show Notes
How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/
Want to learn more about the clinical trial for efzofitimod? https://bit.ly/3EUOxNq
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
The New FSR Initiative
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Jun 27, 2022
Monday Jun 27, 2022
In Episode 64 of the Sarc Fighter podcast Mary McGowan, CEO of the Foundation for Sarcoidosis Research and Tricha Shivas, Chief Strategy Officer talk about an exciting new development that will make it easier to patients to find the right doctor, and for doctors to find the right methods to treat Sarcoidosis.
Show notes
The New FSR Initiative
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
Merlin: https://merlin.allaboutbirds.org/
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
The following is an Internet generated transcript of the interview. Please excuse spelling and grammatical errors.
John Carlin: welcome back to the Sarc Fighter podcast. I am so pleased today to have the people that make FSR absolutely run and operate here as guests today to talk about this new initiative. Our CEO, uh, Mary McGowan and Chief Strategy Officer Tricia Chivas are both here. Welcome to the podcast.
Mary McGowan: Thank you, John. It's always a pleasure to be a guest on your podcast.
Tricha Chivas: Thanks so much, John. We're excited to talk to you today.
John Carlin: So the email went out this week, and we're talking late June. In 2022, FSR has a new program that deals with how FSR will be recognizing endorsing recommending clinics. Mary, tell me how all that works and tell me the gist of this new announcement.
Mary McGowan: John, we're so excited this, week to have announced publicly this really exciting new initiative called the FSR Global Sarcodosis Clinic Alliance. The whole concept of this is to bring hospitals and Sarcodosis clinics together globally in the fight against Sarcodosis. So we were thrilled the very first presentation that we did was in March. We were, uh, hoping to launch this in January, but due to COVID, we couldn't for, um, obvious reasons, because the clinics were so engaged in taking care of COVID patients. And in relatively very short period of time, we are so thrilled that we had 22 esteemed founding members join us as they learned about this. Um, and we're continuing to accept founding, uh, members through September to continue to grow this and work with them as part of a leadership council. And, um, so anyway, this all developed because we, uh, saw this opportunity to be able to connect more closely with Sarcodosis clinics and hospitals. And after we had the vision for this, we actually sent out a survey to clinicians across the globe. Uh, and they, too, verified this opportunity and this need for bringing us all together to share best practices and to network both at the clinician and patient level. And that is why, uh, we decided to move forward with this extraordinary rare disease initiative.
John Carlin: Yeah, that is a lot, and there's so many things I want to unbundle here. But let's start with what are the ways that patients will be supported by this alliance? If I've got psychodosis, how does this help me?
Mary McGowan: Well, we want to ensure in every community across the globe that Sarcoidosis patients have access to the most up to date, uh, Sarcodosis information, education and support services. So what we're going to do is, through, uh, an application process, we're going to have Sarcoidosis patients apply to be peer led support group leaders. And we're going to host support group meetings monthly, uh, at institutions throughout the globe. In addition to that, some of the, uh, volunteers will receive training on how to be community educators and how to work with the media so that we can amplify, uh, the messaging about Sarcodosis about this rare disease throughout local communities, again, around the globe. So we're really excited to be recruiting for these leadership positions, and we're, uh, going to have ongoing trainings that are going to support these leaders and also provide opportunities for these leaders to network with each other. In other words, the, uh, other leaders across the globe in this effort to, uh, be able to provide these kinds of support services to patients.
John Carlin: So these leaders will be patients?
Mary McGowan: Yes, these leaders will be patients. We believe very strongly at FSR in the peer led leadership approach because it's, uh, really the patients who have the best understanding of what it's like living with Sarcodosis. And if we can empower them to, uh, be leaders of the support group sessions, then we believe that that has the strongest impact.
John Carlin: And do you foresee in a post covered world of these support groups would meet in person?
Mary McGowan: Yes, we do hope that they will be meeting shortly in person as the, uh, world hopefully continues to try to get back to normal and as we, uh, continue to fight Cobid and its forces, we do hope to have these in person. And up until the point when they can't be in person, we will be doing these virtually.
John Carlin: And you did ring one of my bells when you said media training, how to deal with the media.
Mary McGowan: Yes.
John Carlin: Maybe I can help you with that.
Mary McGowan: We, uh, would love that, John, of course, because, uh, we want to make sure that our volunteer leaders feel comfortable working with the media and, uh, have an opportunity, uh, to rehearse their talking points and again, empowering them so that they can empower others in their local communities.
John Carlin: Got you. So there's 22 of these centers. That is center the right word? We're going to call somebody who's one of the 22.
Mary McGowan: We're calling them founding members of the FSR, uh, Global Clinic Alliance.
John Carlin: Alliance. Alliance members. Alliance members. Got it. And there's 22 alliance members. But that's all around the world right now, as you and I are speaking on June 24, 2022.
Mary McGowan: Yeah. So right now, the 24 that have joined are from the United States. We are, uh, doing a webinar in July to invite all clinics globally, from around the world to the webinar about the alliance. And we're hoping, uh, at that point, that we will then have an opportunity to introduce this to International Sarcodosis, uh, Clinic Alliance potential members and have them join also as a founding member, I.
John Carlin: Know because I've talked to so many doctors in other parts of the world through the podcast that FSR has got a long reach. So I don't anticipate that. I think, uh, it's going to be very popular in other parts of the world.
Mary McGowan: We agree. And we're very excited to be working with our International Clinic, uh, future, uh, members.
John Carlin: Right. I got you. So now, we talked a little bit about the patient side, but this has a big upside for the doctors, the researchers, the clinicians, I guess, is the proper term. Uh, what is the clinician facing program that the alliance offers?
Mary McGowan: Well, there are several. I'll highlight a few. First of all, we believe, and we also confirmed again through the survey, that there's a real desire for these clinicians to have an opportunity for peer case review for, uh, cases that they have. Sorkidosis cases. So we're providing a platform for these peer case review sessions so, uh, that the clinicians can share the information and can get guidance, uh, and advice and input from other clinicians at other clinics, uh, worldwide. So that's one, the other one that we're really excited to be launching is a journal club, and we believe, uh, a, uh, Sarcoidosis specific journal club that's going to be supporting early career professionals and also encourages clinicians to stay up to date on Sarcodosis, um, medical literature, uh, is really going to be very effective. And again, an, uh, opportunity to bring these experts in these global clinics together to learn and talk about these journal articles. And then finally, we're also providing clinical, uh, engagement and education through, uh, our Clinic Engagement series. We just held our conference on June 15. We had, uh, I think, nine different countries that were represented over, uh, 100 registrants. And we had Dr. Menza from the NHLBI, who was, uh, the keynote speaker at this, um, really exciting conference. So we're going to be doing these quarterly, uh, and again, it's an opportunity to bring clinics together globally, to stay up to date on research and other topics around orchidosis care, education, research and support.
John Carlin: I guess the end goal for all this, because when I'm talking to patients on the podcast, what they're saying is, I go to my local doctor and they've never heard of Sarcoidosis. This would be the beginning of a way to fix that, right?
Mary McGowan: Correct. That's our belief as well. We do know, uh, that, again, uh, awareness is large, not only in the general population, so that if an individual does have psychedosis, uh, and has signs and symptoms of Sarchidosis, that they can bring that up to their doctor, hopefully for a shorter time period for an accurate diagnosis. But also to your point, John, from the clinician standpoint, again, there are, uh, so many rare diseases, and we want to make sure that Sarcodosis is front and center with clinicians, uh, and again, for the opportunity, uh, for a more timely, uh, accurate diagnosis, which, of course, can be lifesaving. And this is, um, critically important. And FSR beliefs strongly in making sure that we are working as hard as possible to bring this awareness to clinicians, uh, as well as to patients themselves.
John Carlin: Basically, what this is infrastructure that's going to have doctors talking to each other more, sharing their research, sharing their best practices, sharing their success and failure stories, so that more doctors and more places are conversing about Sarcoidosis and understanding best practices, best paths forward, making patients have better outcomes.
Mary McGowan: Absolutely. Beautifully said, John. Thank you.
John Carlin: Okay. All right, well, that's my job. I like distilling stuff. First, I want to ask you, I know that FSR has been doing, uh, some stuff with the National Institutes of Health, and there really is some momentum now to get some federal backing for some of the things that FSR is doing and for Sarcodosis related research from the government, which we never have had before.
Tricha Chivas: Yeah, thanks, John. We've been working really hard to grow relationships with the National Institutes of Health. And one of the ways that we've been doing that is to make sure that we are engaged in different institutes at the National Institutes of Health. So there's a lot of different institutes that have a particular focus. So Mary mentioned earlier that we had a session with Dr. George Menza, um, from the NHLBI, which is the National Heart and Lung and Blood Institute. And that is one of the, uh, areas, um, that has been a big focus for where Sarcodosis has been in the past. But we're also focusing in other areas, such as in the, um, environmental health studies area. So there's an institute that focuses on environmental impact, since we know there may be some environmental causes to Sarcodosis, um, and making sure we're part of that. We've been working with the organization that focuses on arthritis, um, and musculoskeletal disease and skin disease. Right. So we know there's different manifestations of psychosis, and we're having conversations now at all of these different spaces. In fact, this year in February, um, you may recall that FSR was able to participate in the NIH Rare Disease Day by having a panel, um, there. So really kind of activating and showing the NIH again, what we are doing and why the work that we're doing is so critically important in this space. And these are conversations that we're continuing. But in addition to the NH, we've also started working with the FDA on a number of different things in order to draw more attention from that federal level as well.
John Carlin: And are we making some progress with respect to this work?
Tricha Chivas: Yeah, so very excitingly. We just had a FDA patient listening session, uh, on pulmonary Sarcoidosis. This is a really, um, unique opportunity for FSR to get directly in front of the FDA and many, um, members of the FDA. We had 50 attendees at this session. It was a very well attended session, representing a lot of different institutes at the FDA. And for all of your listeners. I know everybody is a little, um, bit more familiar with the FDA now after cobid, but the FDA approves drugs, but they also, um, approve technologies that are being used for diagnosis. And they also, um, can help with the process, um, for repurposing drugs. So they have a number of different angles that we wanted to highlight that tie into the work and the needs of our patient population. And so what we did was we had this listening, um, session, which is a closed session, we weren't able to have that available to the public. That's the rules of the session itself. And then we had patients that came together, shared their stories. We had six patients, one caregiver. Mary shared a bit about things that we had learned from the community on this. And then, um, Dr. Lisa Meyer, who had provided the clinician perspective. And so that was our, uh, main goal was to get that information out. And these were really passionate stories that reflected what we heard from the community.
John Carlin: So what would actually happen in a listening session? The doctors are listening to the patient's talk and see how Sarcidosis affects their lives.
Tricha Chivas: Sure. Great question. So basically, it's an hour and a half long, um, meeting, and you have all of these different folks at the FDA who are making decisions about how drugs are approved or how technologies move forward. And we wanted to give them a chance. A lot of them are very scientific and don't necessarily have the chance to truly understand the patient experience. So, um, what this is, is a chance for them to understand how Sarcodosis is impacting individuals daily lives. What were the challenges that people faced with diagnosis, um, where did the technology, um, fail? And why do we need different technologies that might be able to do a better job, to do better at diagnosing? Understanding the drug, um, development process from the patient perspective would have been the barriers or challenges. So we raised issues there about diversity and, um, the challenges for diverse populations to be involved. We raise challenges for the drugs that are currently available, not adequately addressing the needs of, um, those living with Sarcodosis. So steroids is actually FDA approved in Sarcoidosis. And so that is oftentimes, um, a go to, as I know you've talked about many times on the podcast, a go to for clinicians as they're moving forward because it's cheaper there, um, are ways that it does work sometimes for some patients, but the cost was also something we reflected in those stories. So the stories were individual people sharing how all of those different things came to play.
John Carlin: Um, if nothing else, Sarcodosis is on the FDA's radar now, right?
Tricha Chivas: Yes.
John Carlin: There's so many orphan diseases and everybody's clamoring to be recognized, but it sounds like, thanks to the work of FSR, that's happening now. Our voice is a little bit louder, 100%.
Tricha Chivas: We are on the, um, radar, and we have some really exciting things that are going to be coming out as a result of that. And Mary, I don't know if you wanted to share some of the things that were coming out as a result of what we did with the listening session.
Mary McGowan: Absolutely. So after the listening session took place, we started creating, uh, a white paper that have a little bit more details on the session. And we're going to be launching the white paper in mid July. In addition to that, we're going to be hosting a community webinar in August, because we're so grateful to the community. I think. You know, John, our approach at FSR is always about engaging the community in our efforts. So, in preparation for the FDA patient listening session, we sent a survey to our clinicians, to all of our patients, and to our industry partners, because we wanted to get, uh, what they thought was the important messaging to send to the FDA. And that's how we came up with our messages. That's how we came up with the patients who had those stories that, uh, reflected those messages. And so we want to give back to the community and share the results of the survey and share the details of this really milestone event for FSR that took place. In addition to that, we are, um, also now working on the possibility of hosting a patient focused drug development session sometime later next year. And these sessions are much larger. They are open to the public, and they are important for advancing clinical trials and drug development. So we're really excited about that. And at the same time, we're also exploring conducting additional patient listening sessions and other manifestations, such as neurosychotosis or cardiac sarcoidosis to deepen the FDA's understanding, uh, and needs of those living with this complex disease.
John Carlin: Yeah, when you, uh, say neurosark, I'm so happy to hear that. I'm an orphan among orphans as the neurosark representative. So I'm, um, glad that that's getting spotlighted, uh, a little bit.
Mary McGowan: Uh, absolutely.
John Carlin: Yeah. All right, so now we got clinical trials, and it does seem like there's a lot more going on right now with clinical trials and trisha. Can you bring us up to speed on what's going on with that? I've talked to several different people, and I know there's a bunch of pharmaceutical companies out there, so can you kind of let us know where we are with that?
Tricha Chivas: Yeah, 100%. So this is a really exciting time as far as clinical trials goes in sarcodosis. In the past, we've had, um, one clinical trial running at a time, or many times even no clinical trials running in our space. But right now, um, there is a lot of interest and engagement in the clinical, um, trial space. And as you know, SSR has done a lot of background work to try to make sure that this is really possible for pharmaceutical companies to come into this space. So what's important and what we have done is we've made it so that they understand there is an eager population that's interested in clinical trials that wants more and new drugs, and helping to do that education on the back end for them. And then, in addition, we have really worked very closely with pharmaceutical partners, getting them access to, um, some of the key opinion leaders in the space, some of those expert clinicians that are out there so that they could have really good conversations and understand a little bit more about how their drug might work, whether it's a good fit for the clinical practices that they're trying to meet. And then in addition to that, we've worked really closely with the patient, so we know that patients are, um, interested, so we want to make sure we're getting that in front of them. And so we put in place a system that allows for people to know about clinical trials that are going on. So we do a lot of marketing and advertising, um, for that, for patients, so they can get involved if they're interested in being part of that process. And I'm really excited to share with you that we have seven sponsored clinical trials underway right now. And so, remember, I said there was about one or two happening, staggering over in the past. And now, um, we have seven potential clinical trials that are starting off. And just to clarify for your audience very quickly, when we're talking clinical trials here, we're talking pharmaceutical sponsored or biotech sponsored clinical trials, which are the ones which will end up resulting ultimately in a new drug. And so we have the academic studies which are building all the background for that, and they continue. And those are very important, but these are the ones that are getting much closer to getting that new therapy available for patients.
John Carlin: Seven.
Tricha Chivas: Seven.
John Carlin: That's amazing. Just in the time that we've been doing the Stark Fighter podcast, I think, like you said, one or two, and that was reason to celebrate. And now, a couple of years later, it's up to seven, potentially. And that could result in seven new drugs that patients could take. And the farther you can get those of us who are patients away from steroids, the happier we all will be.
Tricha Chivas: Exactly. Yeah. So it is a really exciting time. If anybody does want to know more, um, about clinical trials, please reach out to us, how they work. We're happy to give more background information, but this is the moment where we hopefully can get more and more engagement and more excitement around this. And this is why partly, we're talking to the FDA as well, because it's very important for us to continue those conversations.
John Carlin: So anything else happening that listeners should know about?
Tricha Chivas: Sure, yeah, there's a lot going on in research right now. Um, thank you to everyone who has supported all the research efforts that we have. FSR has been taking our research funding worldwide. You may know that we have funded over, um, $6 million worth of Sarco Dosis specific research efforts. And last year, we gave out about $200,000, uh, in research grants to academic researchers. This year, we're poised to give out over $300,000 in research funding to our academic researchers. And so this is really an exciting time. We just, right now, are in the final wrap up stages for our fellow that's going to be coming out this year. So we have received those applications and are finalizing the announcement, so keep an eye out for that. And very excitingly, we have grants that just came, um, out, uh, specifically for, um, pilot grants, which are early background kind of information studies that can help make it possible for researchers to get bigger funding to move the needle forward, and a new grant, which we have not had up until this point specifically available for cardiac sarcidosis, and we had an incredible amount of engagement around that.
John Carlin: Yeah, so let me ask you about that. How excited are the researchers, Mary, uh, for this opportunity?
Mary McGowan: Really very exciting, and I think it builds off the momentum that Trisha has been talking about, just about the interest in clinical trials and in research in the sarcodosis space. Again, we received the most applications ever for our pilot grants, and we received a very high number of cardiac sarcodosis grants, by the way, which was made, uh, available through a very generous donor to FSR, and wanted us to be providing funding, uh, specifically for cardiac sarcodosis. So we are so grateful to donors who allow this type of, uh, funding for additional support and research for, uh, sarcodosis. But I think all of this combined, John, is really building on this tremendous momentum for sarcodosis. Again, we see it at the FDA, we see it through the Clinic Alliance, we see it through research, we see it through the patient engagement, and it's just such an exciting time to really be moving the needle forward for sarcoidosis. We have our upcoming Patient Summit, uh, and thank you for your leadership, uh, as part of the Patient Advisory Group. And you all coming up with the title of Unveiling Possibilities Moving forward. And really, this is just what is happening at foundation for Sarcoidosis and for sarcodosis globally. And it's most exciting.
John Carlin: Yeah. Tricia, do you want to add anything to that?
Tricha Chivas: I don't have much to add, uh, except to say that we are also very, very excited. I know that the, um, conference itself is something we're very excited about. There's a lot of opportunities for us to engage around the conference. If you have not attended, um, an FSR conference, this is virtual, it is available. Last year, we had many individuals from all over the world participating in this. There's opportunities for networking, there are opportunities for engaging with global experts. So, um, whether you're brand new or you've, uh, had sarcodosis for a little bit of awhile, we'll have different tracks that can help you learn a little bit more about what's happening in the disease or what you need to know. And then we also have these great tracks that came out of the wonderful theme that you came up with that's really focused specifically on things, um, like understanding your, um, finances, how to talk to your clinician, how to engage and learn, um, from others when you're trying to navigate the symptoms of your disease kind of life hacks, as it were, in order to think about things. So we're really excited about, um, that coming up and what that conference is going to be when we invite all of you to join us.
John Carlin: Yes, the summits are wonderful, and I hope we get back to a point where they're in person again. Hopefully, we, uh, can get the pandemic behind us, and that's just my thought, just thinking, um, out loud, the networking opportunities, I think, are as good as they are virtually. I'm hoping that eventually we um, can all kind of meet in person. Because every time I've been for work to an event, you learned, uh, as much having a beer after the day, sitting around with your fellow conference as you do in the conferences themselves.
Mary McGowan: Right?
Tricha Chivas: And I think that's one of the things that will be another benefit coming from the Clinic Alliance is that um, opportunity for um, more local level engagement, uh, with others. And that is definitely something we want to be focusing in on as we move things forward there.
John Carlin: Got you. So let me shift gears a little bit, Mary. Last year, early this year, there was some really exciting programming, uh, focused on increasing diversity. I was involved in some of that and inclusion with respect to uh, sarca dosis. How will FSR be continuing that work?
Mary McGowan: Uh, John, this is such an important area for FSR. We believe so strongly in diversity and inclusion in everything that we do at FSR. But we were so thrilled, uh, with the very successful results, uh, of the Ignore No More Campaign. This campaign was focused on African American women and sarcoidosis. It was just an incredible reach with over 500,000 media impressions. We were so thrilled to have Gerald Prescott Galen, who's an actress of AMC's Walking, uh, Dead, and Bets All the Queen's Men. She's been living with sarcodosis for many years, but most recently was diagnosed with cardiac sarcodosis. She's been an amazing PSA for us that got over 1000 views in just one month and really helping to amplify our uh, messaging about this really critically important, uh, work. As you know, African American women have the highest prevalence of sarcodosis and by far the worst outcomes. And so it's important that the African American, uh, community understand this and also that clinicians understand this. And so that's what this was really uh, all about. This campaign. We're um, really excited as part two, we've just gotten uh, funding for uh, a part two campaign that's, uh, going to be called Ignore No More Act. Now act stands for Advanced Clinical Trials, Equity in Sarcodosis. And this is really going to be taking a deeper dive into how we um, can support and encourage clinical trial participation, uh, among all African Americans. Um, and our goal is to really learn from the community and to create strategies that can be captured in white paper, uh, and will be helpful tool for, again, both academic as well as, uh, industry sponsored trials. And we're really excited to be, as part of this campaign, hosting a congressional briefing to drive change at the federal level. So I hope listeners stay tuned for this really exciting expansion of this national campaign, and thank you for asking that question. We also have a Chance Zuckerberg initiative going on. I'll turn it over to tricia. She's been working very closely with the Chan Zuckerberg group, uh, on this exciting diversity campaign as, um, well, yeah, so.
Tricha Chivas: The Chanceuckaberg Initiative, I think it's really important to say, for the community. So everyone knows this has been not just a grant and then the work that comes, uh, out of that, but this has really afforded FSR a lot of other opportunities for advancing and growing the skill sets of the staff, for reaching out and understanding from others that are in the network, um, best practices that they're using that we can, uh, then bring back to our community. So this has really afforded us a lot of opportunities in order to expand and grow and move things forward for those living with Sarcoidosis, which is our ultimate goal. The actual grant itself will be looking to work with clinics. So, um, members of the alliance, or, um, others that will be working with those clinics and helping to improve the diagnostic, um, and what we'll call the referral pathway. And what I mean by that is the ways that you get from your local doctor, your, um, local pulmonologist, or your local generalist to those more expert, uh, care. And what is that pathway? Um, and how do we really define that so that we can, again, reduce the amount of time for diagnosis and improve the pathway for treatment, especially if someone's living more rurally and they don't have that kind of connection to a more urban center that might be more, um, advanced in this space?
John Carlin: I've never heard of that term before, the referral pathway. And you, um, guys are so good at sort of finding terms because you see this stuff all the time. The individual patient that lives in the middle of north or South Dakota or some rural area, in fact, not too far from where I live here in Virginia. That's what they talk about. They say my doctor had never heard of sarcle dosis before. Um, I'm not in a real large urban area, but we do have a large clinic here. People drive 4 hours to get to where I am in Roanoke, Virginia, for care, because we're the big medical center in this part of the world, right, serving the western half of the state of Virginia. But even here, there are very few Sarca doses patients. I might have been one of six for my Rheumatologist doctor, which is not the same as, um, going to Cleveland Clinic, which is what I ultimately decided to do, where I'm dealing with a center where that's all the doctor sees. So that's not so. That term is a referral pathway, and you're trying to sort of take that from being a rural road to an interstate to get you to that doctor quicker.
Tricha Chivas: That's all right. I think for us, what we're trying to do is help to identify those areas where patients are being seen and create a kind of a conversation both ways from, um, the major centers to some of those more local level individuals that are, um, supporting individuals living with Sarcodosis, and then, um, also allowing an opportunity for them to have that conversation back. And because a lot of times, even as you're going to Cleveland Clinic, John, you still have the local doctor that you're going to want to talk to, and giving that kind of conversation, allowing them to get the kind of education they need. And then when a case is more complex or they need more support, they can have that support that way. And that's what we're trying to build.
John Carlin: Awesome. So, so many exciting things. Mary, what else can listeners look forward to as we move forward over the next few months?
Mary McGowan: Well, we have so many exciting things that we've been talking about going on at FSR. Tricia and I are continuing to speak internationally at different conferences. As a matter of fact, in just two weeks, we're headed to Boston. We're both going to be speaking at the World, uh, Orphan Drug Congress, which is really exciting. It's a very large conference, and it's wonderful to have Sarcoidosis being represented, uh, there at that conference. So we're really looking forward to that. Uh, I think also the viewers, if they want to stay in touch with us in terms of the Clinic Alliance and its growth, if, uh, anybody is being treated at the center or alliance that is not on our web page and would like to share contact information, please, uh, let us know, because we want to ensure that we are reaching out, uh, to everybody to offer this opportunity to bring them into this really extraordinary, uh, unique effort. And also, please sign up for our patient conference, um, July 30 and 31st. It's going to be so exciting this year. Last year, we had over 300 attendees from around the world, so we're really looking forward to a really exciting conference this year as well. So those are just a couple of other events. We have some other events on our web page that are coming up. Uh, we have a couple of, uh, painting sessions, so I would encourage anybody who's listening to please join FSR if you have not, all you, uh, simply do is fill out a quick form with your email and that helps you stay up to date on all of our different events and activities.
John Carlin: Okay, so I've got a note here to ask you about life, uh, hacks and living with Sarquoidosis. So how will patients be able to take advantage of those or find out what those are?
Tricha Chivas: Sure, I'll jump in if that's okay. Mary.
Mary McGowan: Great.
Tricha Chivas: The life hacks things that we're trying to do here is learn from folks like you, John. Like, what do you do when the fatigue is overwhelming? Or what do you do when you're just having a really painful day? Or what are those things that you're doing? Life hacks are the tips and tricks that people have used in their own daily lives to navigate the disease and learning from individuals that are living with the disease to, um, do that. So this is going to be one of the exciting kinds of sessions that we're having this year are, um, beyond all of our wonderful chat boards and we have a coffee break that's open and chatting. This session is a chance for people to talk back and forth with one another, um, and share how, um, they are managing their day to day.
John Carlin: Got it. Life hacks. I love it. And so can people now sign up? Is there not a discount if you sign, uh, up early? How's that work? Early bird? Is that how that works? And how long is that available?
Mary McGowan: Early bird registration right through the end of the month. So it's a great opportunity. And there's also, John's, scholarships that are available. So for people who want to attend the conference, uh, there is a registration fee, but we want to make sure that there are no barriers to anybody joining this conference. So if anybody needs financial assistance, there's information there as part of the registration as well. Uh, and so, please, we, uh, want to be able to ensure that everybody has access to attending this really important educational, global event as part of that. But, yes, please pay attention to, uh, the early bird registration, uh, as well.
John Carlin: Got you. And if somebody can't afford it, but they want to be there, we'll find a way to make it happen.
Mary McGowan: That's absolutely correct. We want to make sure that everybody has access again, uh, to support education, opportunity to ask questions, all the networking that takes place. We understand that this is critically important to bring people together, living with Sarcoid doses to support one another. And that's what this patient conference is all about.
John Carlin: Uh, well, guys, look, we've covered a lot in a short amount of time. I'm just thrilled to have had both of you on. But more than that, thrilled to hear about all the momentum, uh, on all the different fronts. So congratulations on just really getting Sarcudos out there and advancing the cause you really deserve. Kudos.
Mary McGowan: Well, thank you, John, and thank you for all that you're doing. These podcasts just really help, uh, to, again, amplify the messaging, the incredible interviews that you've done, the highlights of the campaigns that you continue to do. We are so grateful to you for doing this incredibly important work and sharing, uh, this information worldwide. And so you're, uh, part of the great success, uh, that we are all having, as well as all of the patients, the entire Sarcodosis community. It's everybody working, uh, together to spread the word, to spread the awareness, to engage in initiatives. And this is really the result of everybody's success in working together, um, building this momentum. And we're looking forward to the near future to continue to see great successes on the continuation of this momentum building so rapidly now.
John Carlin: All right, well, thank you all very much.
Tricha Chivas: Thank you so much.
Mary McGowan: James on.
Tricha Chivas: We appreciate it.
Monday Jun 06, 2022
Monday Jun 06, 2022
When sarcoidosis invades your life and rearranges your priorities, it's hard to cope. Sometimes it's the little things.
Sarcoidosis makes most of us slow down. For some of us almost to a crawl. But even while we are slogging along there are ways to be content with our lives.
Here's my stab at it.
Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
Merlin: https://merlin.allaboutbirds.org/
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday May 23, 2022
Monday May 23, 2022
Garrie Farrow has been fighting sarcoidosis for 15 years, and maybe longer. It has spread from her lungs to other parts of her body including her ears. Yet she is still working - and still fighting. In fact she spends a great deal of time helping other Sarcoidosis patients as well. In Episode 62 of the Sarc Fighter podcast, Garrie shares the story of how sarcoidosis started out in her lungs, how doctors may have mishandled the early diagnosis and how sarc has had a tragic impact on her family.
Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
The following is a web-generated transcript of my interview with Garrie. Please excuse any spelling or punctuation errors. jc
Welcome back to the Sarc Fighter podcast. And joining me now is Gary Farrow, uh who plays many roles within the foundation for Sarcodosis Research as a volunteer and is coming up on 16 years as a Sarc survivor. Garrie, welcome to the podcast.
Garrie Farrow: Thank you. Thank you. So much for having me today.
John Carlin: So you said it's 15 years plus almost 16 years. And you knew the anniversary date, didn't you?
Garrie Farrow: It's actually uh August. I started getting my appointments in April. So for me, April is the anniversary. But I didn't get the official diagnosis until August 16 years ago.
John Carlin: 16 years. That's a long time. And I want to hear about when did you first know something was wrong?
Garrie Farrow: Honestly, I knew something was wrong 20 years ago. Um uh I have a thing that I love, cute shoes and purses, and I have these fantastic boots that I love to wear. They were the greatest thing ever. And my feet and ankle started to swell. And um I used to play basketball in high school, so I'm used to ankle Springs. I know what my feet and ankles will do, but this was not normal. So probably uh about four or four and a half years in total going to different primary care doctors. And I am um a taller, larger woman. And so I've always been told, well, you need to lose weight. Like, I exercise every day. I'm not losing any more weight. But they're saying the reason my feet and ankles were swelling was because of the weight. So I went and lost more weight. Still couldn't wear the shoes, moved to uh a different city, found a uh new primary care position. Actually, my second one here in Tallahassee was the one who went, this is not normal. You are uh about 30, 31 at the point. This is not normal. Let's send you for a chest Xray. And that's how my journey officially started.
John Carlin: Wow. Chest X. You ankles hurt. So the first thing they do is send you for a chest X ray, which wouldn't seem intuitive, but I guess the doctor must have been thinking pulmonary sarcoidosis.
Garrie Farrow: Then she kind of mentioned she goes, It could be your lungs, it could be your heart. She goes for your feet and ankles be swelling. There's something vascular going on, and we don't know why. She goes, I'm listening to just using. I'm listening to your lungs. It sounded fine. You're exercising, um you're uh not complaining. You have any shortness of breath. So let's figure out what's happening with you.
John Carlin: Okay? Was that conclusive or was that just the next clue?
Garrie Farrow: The chest X ray was the next clue. They um realized at that point because you could see my lymph nodes on X ray and the lungs looked suspicious. And at that point, I was sent for a media style oscopy. Basically, biopsy ended up with a brand uh new scarf. And that's where they definitely confirmed that, yes, this was circadosis because after the chest X ray, they said this could be leukemia or Sarcodosis. The way I remember it was, I heard leukemia and possibly sarkidosis. And the leukemia scared me because I hadn't uh heard of soccer doses before in any major detail other than burning Mac.
John Carlin: Right. So after they figured out it's sarcoidosis with the lymph node biopsy then. Did they start with the normal prednisone routine?
Garrie Farrow: No. I um was seeing a pulmonologist local to my city, and I was told stage one, that four stages. And since I was at stage one, I had no other symptoms happening. There was no reason for me to go on any medications. And that if I ever started coughing or becoming short of breath while exercising, to basically come back. And I had one appointment a year later, just everything's still the same. But at no point was medication even talked about. I did go back to my um primary and asked, okay, now I've been diagnosed with Psychnosis. What does that mean? And she told me she didn't know. She goes, I could tell you this much of what I remember from medical school. I can't answer any of your questions. Go back to the surgeon and went back to him. And it was, yeah, you have stage one, but that's good because four is horrible. You're at one, so there's nothing to do. My um current pulmonologist, who specializes in Sarcodosis, uh she said, no, stage one is no better uh than stage four. You had symptoms, you just weren't coughing. She goes, Your lungs did not look good. There should have been some treatment started then, but that took um another shoot. I think it probably was probably about another three to four years before I started any official treatment.
John Carlin: That just amazes me. And I'm curious about the um stage one, stage two, stage three, stage four, which is the terminology that we're used to hearing for cancer patients. And I've heard other patients that I've interviewed on the podcast talk about it a little bit. No one has ever uh used that term with me. Can you describe the difference between stage one and stage four? Other than that, it's worse.
Garrie Farrow: Yeah. What I was told originally was that, yes, my lungs um were cloudy, but they were not completely infiltrated. And you could see my lymph nodes on Xray. Stage four is pretty much you're on oxygen. The lungs are completely Gray uh and looks like um ground glass completely covers the entire lungs. At stage four is how it was described um to me initially, that each stage, your lungs get a little cloudier, a little bit more ground glass until it gets to the point where you're not able to breathe. What I've been told uh recently and confirmed with more research is that, yes, the um stages do impact how the lungs appear, but you could be on oxygen at stage two. You could be um walking around not fine, but without oxygen uh at stage four, it's just showing what the impact on your loans looks like when you're just trying to look at the X ray or the MRI or CT. Go um ahead and actually, stage one, I believe, only includes the link notes and um any of the others only impact just what the ones look like.
John Carlin: So you and I are both on a number of committees with the foundation for Sarcodosis Research. And uh what I'm hearing and maybe, you know, maybe you don't. But what I'm hearing is this stage one through 4 may be just reserved for pulmonary patients because everything you've described is lung involvement. Whereas with cancer, my understanding is when you have stage four cancer, let's say it starts in your kidneys or whatever, it then has spread to other parts of your body and it's metastasized. So when we talk about stage four with sarcoidosis, we're not talking about it spreading to other parts of your body, even though that can happen. But that's not what the stages describe exactly.
Garrie Farrow: Which I find interesting because it would make more sense that they actually classified it that way as they do in cancer, because technically, thankfully, due to one medication, my lungs are clear. My lymph nodes have shrunk in size from being really big to not being outfit. But I had other um organs being impacted by sarcotosis. So to me, following the cancer way of being, I'm probably more of a stage three just because I uh have multiple organs impacted by sarcosis. But currently it's only for lungs.
John Carlin: Got it. All right. And is it still currently after almost 16 years, is it still just in your lungs or has it spread?
Garrie Farrow: It's spread. And it actually took about ten years um to spread.
John Carlin: Um.
Garrie Farrow: I noticed some skin issues, went to my local dermatologist. And first I was told Eczema, then I was told Psoriasis, then I was told I had both went to sarcosis. Um dermatologist. No, this is sarcoid. That's what this is. And so, yeah, the past five years. So past five years, skin, eyes, bones. And now um I lost hearing in the left ear. Um and that's on immune suppressors. Um.
John Carlin: You said after about four years, a doctor said, oh, no, you need treatment.
Garrie Farrow: Yes.
John Carlin: What treatment did they come at you with first? And how has that progressed?
Garrie Farrow: The lovely steroids. The lovely steroids. I was on 60 milligrams for um about a year and a half. A little under. And um that, of course, weight gain, prediabetic, hypertension, um you name it. The moon face. All of it was taken off of that because of the impact. But at that point, there still was not a lot of discussion about new medications. And it was pretty much okay, your lapse look good. We're just going to kind of watch you. Then the eyes started, well, the skin. So then it was steroid injections directly into the skin and steroid creams, which thankfully um no over whole body and past. Then when the eyes and the bones kicked off, that's when I was put on methotrexate. No steroids at that point, thankfully. But then when the um bones kicked off, that's when they said, okay, I started low dose steroids and about five milligrams for three years. That pushed me over the edge with the diabetes. And let's see, um at that point, I think it was year two is when I went back, because by that point, I'm taking metformin and even though they said five um milligrams of steroids you shouldn't be gaining weight. I probably took uh 60 mg. I gained £80. Finally, after not being on steroids for a while, I had lost about 40 started the low um dose and they said you should be fine. Five milligrams is not going to impact you. I probably ended up gaining back 30. And so after year two, I said, okay, look, I need to switch because steroids and I are not working out. You're telling me I need to lose weight? I'm doing the things I need to do and yet my weight is not going in the right direction. It's still keeping up. So that's when I was taking off the steroids and put on the flutter mine, I think I believe I'm saying that correctly, but yeah, and I had to take off methotrexate and switch to uh Humera, which didn't work because of the bones. And I'm now doing rimicate infusions um or Influx map infusions with the Lip global cage.
John Carlin: Is that working so far?
Garrie Farrow: Actually uh going June to get repeat X rays of my fingers. Uh they showed no further damage is what it was last year. So we're hoping it remains the same now.
John Carlin: We've kind of just jumped right to I want to hear more about your eyes and your bones. Sure. When you have sarcoidosis uh in your bones, what does that look or feel like? How do you know it's there? What is the deal?
Garrie Farrow: I know it's kind of hard to see on uh camera, but the fingertips of these three fingers are actually about now only about two times the size of the fingers on this hand. And uh what started off as just a finger swelling then turned into I would go to pick up a pen or I'd go to pick up my purse or anything and um I could literally feel something crunching in my fingertips. And I was just like weird um because every once in a while your fingers might pop or you crack something. But I went, no, that is literally in the fingertips. I went to my local PCP and he told me it was finger clubbing due to socketosis and lack of oxygen. My sister actually has or has finger clubbing. She was diagnosed after I did because I pushed her. And so I've seen what finger um clubbing looks like and all her fingers were impacted.
John Carlin: I've never heard that word before. Finger clubbing. Fingers look like little clubs.
Garrie Farrow: Yes. I don't know if you can kind of tell on camera. You see how this one's more rounded than the other?
John Carlin: Yeah.
Garrie Farrow: It becomes very bulbous is the other word that they like to use. And your nail bed actually changes shape where instead of being just if you look at your hands, just regular nail bed, they actually expand because since the tip of your finger is getting bulbous, your nail bed has to go with it. And it actually started splitting because my nail bed couldn't keep up with the growth of the finger. So it was splitting. And as I initially pushed um back because I told him that every time I come to see you or see my specialist, my oxygen gets recorded at 98%. 99%. I'm not wheezing that I'm uh aware of, and nobody's told me otherwise. And I've had breathing tests. And if that was the case, all of these should be bulbusy and look funny. It is literally. These three went to see my Pomodologist, and I was on methotrexate. And so they were really concerned about any of the other side effects that method track state could have. And she goes, okay, is there anything else going wrong with you? Because your loans look great. I don't normally see patients like you because phenomenologist. So I'm not used to seeing healthy loans anymore. Anything else going on? And I went, look. Uh and she goes, that is not normal. And I haven't seen that with methotrexate patients. Let's send you for a hand Xray, which then worked into a whole body bone scan. And I now have a Rheumatologist because they realize that uh on Xray, my um fingertips, all of them, actually. But these three are the worst. My body has attached the bones um to the point to where it is broken down and my body is reabsorbing the bone. So the reason they're swelling is because um there's fluid, and that's what causes the swelling. And I actually have four toes involved as well. But all of them, you can tell all of them have been attacked. It's just these three were hit the worst because I dropped a box on them while moving.
John Carlin: Sorry, is it painful? Not dropping the box, but I'm just walking around every day with your toes. And does it hurt?
Garrie Farrow: Yes, it depends upon what I've done that day. Um some days are worse than others. I am a trainer, so I constantly um typing. And I love playing video games. So playing video games, typing certain things. Um there are days where I don't want to use my fingers. It's not worth it. Or I have become very adept at using my thumb and my ring finger on the right hand because um it's not sensitive to touch per se, because doing this does not hurt. But actually going to grab something unless I can um figure out a way to grab it down here. Think of the worst bruise um that you've ever had. You'll get that you hit it just right, and it doesn't really hurt until you get it in the right place. That's what it feels like.
John Carlin: Okay, let's talk about your eye.
Garrie Farrow: Yes.
John Carlin: What were your symptoms initially?
Garrie Farrow: Just a lot of redness. Tallahassee knowns for pollen. Uh and so I just put it off that it's the pollen. Um it is the green season, and it's uh a lot of redness. And then the conjunctive not conjunctivitis, but outside of your eyes were constantly inflamed, like, felt like I had dirt in them. And again, pollen. I just pushed that off. It wasn't until I have glasses that actually with a tent. I just lost the name of it that you go outside. The sunlight and your lenses.
John Carlin: Yeah, they get darker. Yeah.
Garrie Farrow: I walked outside. Even with that on, literally stopped in my tracks, uh shut my eyes, and was like, oh, my God, the Sun's too bright. My eyes literally hurt. The only way I could um describe it is like a shooting pain through my eye. And I stood there just going, oh, my. Okay, this isn't normal.
John Carlin: When was that? How long ago was that?
Garrie Farrow: That was probably about uh six years ago. Yeah, about six years ago. Um and again, I went to my local Icare uh provider, and it was like, yeah, this is arthritis. And was um prescribed steroid drops. Then it continued, and I was diagnosed with Uvitis and ended up getting referred to an ophthalmologist uh because I kept going to my optometrist because, of course, my glasses. And they were like, yeah, this is a Sarcodosis issue, not just, you know, you have recurring eye infection. And so that's how the eyes joined up.
John Carlin: Wow. Is that controlled?
Garrie Farrow: Currently, yes. Thankfully, with the eyedrops, uh uh I think I was on the eyedrops for about a year, and I go back in right now, thankfully, because the last test, uh my last exam came back fine. I'm set to not have to see them for a year, but when my eyes are unhappy, I probably see the ophthalmologist about every three months. And drops and tests I do because of the last one, has a beginning of a glaucoma in one eye because of the recurrent flares in my eyes. So we're kind of watching that.
John Carlin: You said the magic word flare, which is what a lot of Sarcodosis patients fear.
Garrie Farrow: Yes.
John Carlin: You get everything under control, and then all of a sudden you wake up one day and things aren't right, and the Sarcodosis has become active wherever it is in somebody's body. When you just use the word flare, are you talking about flare, as in bright light hitting your eye or a flare up of the Sarcodosis in your eye?
Garrie Farrow: Flare of the sarcidosis in my eye. Uh for me, the paint, it feels like a flare of a light in my eye, but my body has um flared itself. There's something in my immune system that has gone into overdrive and done its attack like it usually likes to do.
John Carlin: You mentioned Humera, and that didn't work. You said, because of the bones, I think, is what you said. What is the connection between Humera and bones?
Garrie Farrow: Actually, none. The only reason I was put on humor was an experiment because um the methotrexate obviously worked perfect for the lungs. But because my bones were starting to go, she was like, okay, we can't put you back on steroids, obviously. So what can we do? And at that point, um Humera. Uh it wasn't officially approved for off label use, but it was showing some impact on the immune system with patients that had Crohn's disease um and really severe, I believe IBS, um and I apologize if I'm incorrect on that one, but it was definitely used in Chrome's. She said, okay, let's try something, because obviously your body is still in overdrive. Let's find a different method to shut off uh your immune system. Humera was picked because there uh was another medication, and I'm blanking on it right now that again, it was another off label cancer medication, but there were so many other side effects, and one of them because of uh where my weight and my diabetes were. Uh she was really hesitant to use that one. So that's why Humor was used. And it was just a test to see. Would it help with my fingers? Because at this point, my options were limited.
John Carlin: And uh you ran it, what, for six months?
Garrie Farrow: I've been on actually a year because they said it's six months just to figure out if things are going left or right. And the first six months was to make sure my loans did not reengage, for lack of a better word, be changed in how they were going. The bones, after um six months at least, didn't show further damage. They were like this, and I'm never going to regrow the bone, but at least it didn't look like it had uh gotten worse. The reason I had to switch from Humera to the influx of Infusions is the bones remained where they were, but then I lost um the hearing in the left ear, and they're like, okay, so obviously something is not quite right again. So Humor kind of stable things, um or at least shut up my immune system enough, but not enough. So that's why I'm on infusions.
John Carlin: Let's talk about your ear. What happened there.
Garrie Farrow: Again? My wife and I woke up one Sunday morning with a sinus infection. I'm sorry. Through all of this with the whole eye things, I've had problems with my sinuses um um for quite a while, but it was after the eyes I ended up Sarcodosis caused me to have polyps um inside my nose and in the back of my throat had the polyps removed. They're like, yes, this is definitely sarcoidosis, but you're already on all these other medications. That's um what we would have prescribed for you. So call us back if something changes. I woke up one Sunday with a very bad sinus infection. Um the usual signs and symptoms. And that's um when I woke up that Sunday morning and my boyfriend asked me something, but he was on this side of me and I did not um hear him at all. And he thought I was mad at him. So it was later on the day, um throughout the day, he was like, okay, what did I do to make her mad at me that she wouldn't respond to me? And it wasn't until later on that day that he um asked, I said, I didn't hear you. And so he went over to that site and said something I'm like, I literally can't hear you. I had the same day appointment Monday. And they were like, oh, that's um your sinus infection. Once your sinus is clear, here's an antibiotic. Your hearing will return three weeks later. Found out um my ear hairs are fine. I have no tumor pressing on the nerve. Further research. It's just one of the uh symptoms that you get. Single sided hearing loss caused by sarcosis.
John Carlin: That is just amazing to me.
Garrie Farrow: Yeah.
John Carlin: So you're walking around your job is you are a trainer. What kind of training do you do?
Garrie Farrow: Software. Technically, the official Titles application is Trainer. Well, the full name is Electronic Health Record System. I focus more on the practice management side, but when we do major upgrades and releases, both of us end up training the doctors, the nurses uh and receptionists on how to use our system and what changes come into being.
John Carlin: You have the sarcoidosis all over your body. How does that impact your ability to just live your life day to day?
Garrie Farrow: It has an impact. And of course, the medication side effects play a greater role in how far I do things. The pain, like I said, it's preventing um me from I used to knit as well. I don't do that anymore because my fingers get in the way. And then eventually after time, it really hurts too. Nit I saved my typing for work so I don't play online um video games as much as I used to. Just because I need to be able to type at work. Just anything, to be honest with you, um gripping a jar to try and open it. So I bought a jar opener hearing AIDS so that I can hear on the left side. Um because the other part I realized with me not hearing, I was starting to lose how well I was enunciating words. Uh i won't call it slowing my words, but I was losing just um how well I was speaking. I parse um out my time, to be honest with you, if I know I'm going to take a trip, I don't do much before the trip and I'm definitely not doing a lot after it because I'm just that tired. And when I say trip, my doctors are in Gainesville, which is about a two and a half hour drive from where I am. And going to see a doctor is a trip. Because if I do it in a day, uh when I come back, I'm not going out to eat. I'm not doing what I usually do.
John Carlin: You're not talking about going to Paris?
Garrie Farrow: Yeah, I wish. I really wish. No, I'm just going to see my doctor. My father lives two and a half hours in the other uh direction. So even just that most people it's just a day trip. No, just a day trip is a lot of energy.
John Carlin: The fatigue is real. Then. Do you take a lot of naps? Do you need the naps? Do you need extra sleep at night?
Garrie Farrow: Yes. Problem is, you get to that point where you're so tired. Even though you lay down, you can't fall asleep certain days. I'm like that I've laid down. I would uh love to go to sleep, and I'm just that tired of where I can't. But yeah, naps are real. Naps are required.
John Carlin: Wow. Um sorry. Something's going on with Zoom on. My end used to be if there's just two people, you could talk as long as you wanted. And it's now telling me that I've got that 40 minutes time limit that you used to only get when there were more than two people. And I'm afraid it's going to time out on me. I've still got a lot more things I want to ask you.
Speaker UNK: Sure.
John Carlin: Let's end this meeting and go back um and click that same link again and see if it'll let us start another one.
Speaker UNK: Absolutely.
John Carlin: And if it doesn't, I'll go in and I'll get another link and send um it to you. Just watch your email.
Speaker UNK: Okay.
John Carlin: All right. So I'm going to end it and then let's click the link and see if we can rejoin.
Speaker UNK: Okay. Perfect.
Garrie Farrow: Okay.
John Carlin: All um right. Garrett, you're doing a lot of work with the foundation for Sarcoidosis Research, as we mentioned just a moment ago. And one of them is you're on the Women of Color committee. For people who aren't up to speed on that, what is that? Committee's responsibility?
Garrie Farrow: Sarcasm actually impacts the African American women. I was going to African American community, and it does. Uh but women are more impacted by the disease that if there's going to be a higher hospitalization rate, higher mortality rate, it impacts African American women about up to 13 times more often than African uh American men, even though they are impacted by the disease. Unfortunately, my sister died um from her circuit is three years ago. That's um what made me um join FSR.
John Carlin: We buried the lead. I'm so sorry.
Garrie Farrow: That's um okay. No, actually, it's not that I don't talk about it, but it's really uh the reason I joined FSR and why I applied in the first place, because um of her experience, um the difference between her experience and mine. When I saw the Women of Color committee come up, that really made me go, okay, I need to be a part of this because of her experience and mine and just in general uh and talking with different African American people and some of our residents and going um to see a physician, I don't want to say it's lack of exposure um to certain diseases and a lot of us are more prone to I'm always tired. I don't feel well. I don't have time to go to the doctor. So he's just going to tell me or she's just going to tell me what I already know. So I'm just not going to go. And I wanted to be a part of that committee to help get more word out there that this is not a disease, that you can just be like, oh, it'll be fine. I'm tired. I'll be tired tomorrow. I'll be tired next week. Let's just wait it out. Um and it's this disease. You cannot just wait. The longer you wait, the more damage that's done. And you can't recover from that damage. Once it's damaged, it is damaged. So that's what made me decide to join up.
John Carlin: What was your sister's name?
Garrie Farrow: Sharon. Sharon.
John Carlin: And she had pulmonary sarcoidosis.
Garrie Farrow: Pulmonary and skin. She never went in and got diagnosed for skin, but the spots on her face, um like you have the exact same thing. Go see a dermatologist. Don't have time, don't feel good. From the city that we were from. Um and her doctor uh only used prednisone. Steroids was their fallback. Even when with my methodrest state, when I realized what it was doing for uh me, I was on the road from Gainesville back home, calling her. Go see your doctor, get methotrexy. I promise you, it impacted her lungs away. I'm not sure if it was just due to time. She was a year and a half older than I was, so I'm not sure if it's just due to age, just due to um if Sarcodosis had been passing or a whole lot longer. Um so, yeah, by the time they caught it, by the time with steroids, her lungs couldn't take it literally. At the end, they said that we could um not use any more medication to get any of the fluid off of her lungs. Her lungs are filling up faster than we can get it off of her. And that's what actually killed her.
John Carlin: Oh, that must have been so sad.
Garrie Farrow: It was devastating on the family, because that's not what's supposed to happen. As my father said, you're not supposed to bury your children. So it was hard.
John Carlin: So you stepped up and reached out to the foundation for Sarcodosis Research, even though you had been dealing with Sark yourself for a good long time at that point, yes. And so now you are a fellow advocate, and our role as advocates is to help other Sarcidosis patients.
Garrie Farrow: Yes.
John Carlin: You're on the Women of Color committee. You're on the patient advisory committee with me. And are uh you a Navigator as well?
Garrie Farrow: I've um applied to be a Navigator. The application is uh closed in a couple of weeks, I believe.
John Carlin: Okay, so what does it feel like these days when your job is outreach and counseling other people with Sarcoidosis, and what do you say to them?
Garrie Farrow: It's a weird sensation, to be honest, because um it's not where I saw my life going. Even though I'm a trainer, I'm an introvert. And training for me is easy because I'm talking about the software. It's not talking about me in working with FSR, doing the advocacy. Um it's a different place for me to be because I'm talking about yes, I'm talking about the disease, but I'm talking about my experience with it. So it's pushing me outside myself in ways that I'm not usually used to, even though I do speak publicly for a living. So it's a different place. But I have to um admit that I do like it because getting the word out about psychedosis helps. Unfortunately, my coworker, I think she's okay with it because um I was so vocal about it at work. She was running into some health issues and was diagnosed with pulmonary psychnosis end of last year. Yeah. And it was just like, oh, okay. I'm sad that you're part of my club, but I'm glad you got diagnosed. Right. Because otherwise she was having some interesting things that kept coming and um went and had a biopsy.
John Carlin: So many people say they don't know anybody else that has sarcidosis. You had a sister and now you got a coworker.
Garrie Farrow: Yes.
John Carlin: It's amazing. So your coworker is doing okay?
Garrie Farrow: Yes. She's currently on methotrexate, and I think the last time they did uh the CT scan, things were looking good and they were going to keep her on the same dose. But she's in the first six months. I believe so, yeah. She's got that the milestones to hit before you can really say things are going well.
John Carlin: Is she also an African American woman?
Garrie Farrow: No.
John Carlin: Okay. So it uh just keeps on coming then. But I'm sure that she was curious because she had you as a resource.
Garrie Farrow: Yes. And it was one of those kind of different um conversations because it's not like she works in my Department, but she's not like a close coworker. So it was one of these we had to kind of talk to you for a second. And she goes, yeah, I'm going in. And I don't know quite what to do or what to expect. So I put on the FSR hat. So the first thing you need to do is go out to the FSR website, go to stocksoccervices.org, have your husband go out there as well, because your life is going to change, even though you haven't been feeling well and it's already been changing. If any medications are involved, then please don't do steroids. Do some, see what you can do. Your life is going to change and how it impacts you and your family. And she's got grandchildren. Um and you need to do this research now and don't think it can only stay within the loans. You need to think whole uh body. Don't just discount. Well, I'm older. This must be arthritis pain. It's like maybe it is, maybe it isn't.
John Carlin: Uh are you doing support groups or anything like that?
Garrie Farrow: I'm not. I thought about it, and my introvert little Gremlin was like.
John Carlin: Um.
Garrie Farrow: Uh I thought about it and looked and um I think this is the introvert part. There's nothing local to me. And so I was just like, okay, I never um done the next step.
John Carlin: I was down the road a little bit with starting. We were going to have an event and maybe have a support group grow out of that here in my region in Roanoke, Virginia. And then the pandemic hit and everything got canceled. And that was also about the time I started the podcast for me. I kind of feel like the podcast is my support group because people are listening to you right now, and they're hearing what you're saying. They're hearing what you're going through. And at least if they're looking for answers, they're hearing some of what is normal if there is such a thing with Sarca Dosis. So they may have similar symptoms or similar issues with the prednisone or with the methytrexate or with the ramicade you've mentioned all these things are things that I've been on as uh well. Initially. I'm just curious because you um said for a long time you didn't reach out to FSR and you wrote an op Ed for your local paper, and you said you didn't really research Sarquidosis at first. Was it because you just didn't want to know? Or you just kind of trusted your doctors to know what needed to be known and you were going to take your medication and go on with your life, go back to that time and think what was going on with you then?
Garrie Farrow: I trusted my doctor in that stage one. And again, my problem was I was so focused in on leukemia. That was my fear. And I had come home, and I found one dot Gov website that mentioned sarcoidosis and lung involvement. I was like, okay, but leukemia was huge. So once I got that diagnosis of sarcoidosis, I was so relieved that it wasn't leukemia that uh I didn't push further on myself or the doctor. Because, of course, now hindsight being 2020, even stage one, I um should have said, Excuse me, are we sure I don't need to do something else? Anything else. I didn't even think about getting um a second opinion. And even the only thing I will say, thankfully, when I went back to um my primary and she told me she didn't know anything about Psychro dosage and couldn't answer any of my questions and go see the surgeon, I ended up switching to an internist who knew about Sarcodosis. Uh but even then again, I put that trust in the physicians, um didn't educate myself on it until things started changing.
John Carlin: Yeah. And then all of a sudden, you jump in. I hear the same thing from people that and it can be kind of scary. I've been on some of the online threads where people just say such terrible, awful things about what's going on with Sarcodosis, but they're not saying it in a reasonable, thoughtful way, which isn't their job to do that. But I just didn't want to see it, and I didn't want to know. Terrible disease, terrible medication, blah, blah, blah, blah, blah. And then it would just stop. There wasn't any further explanation because people were just typing responses to one another, almost like reading a Facebook thread on a controversial issue, and people were just going after each other.
Garrie Farrow: And nobody's talking about that. Okay, yes, sarcoidosis is not a fun disease, but there are ways to function that yes, your life has changed, but this is not this is not the end of it. There's other things that you can do. Nobody likes to put that on the thread. That's not as interesting when you're looking at posts, right?
John Carlin: Yeah. People just have to be so sensational with their posts, but they're probably on that thread because they're either bored or mad or both. And so you're seeing the worst of I just stopped looking, honestly. But I found that I probably should have looked further faster. And I'm hearing you say the same thing.
Garrie Farrow: Absolutely. And I'll admit because I was surprised that I didn't know how long um FSR had been around. That when I started searching for sarcoidosis. Originally, I only got the Gov um sites, Medline, WebMD, and I just lost the name of the other one that has a symptom um checker on it that no doctor loves. And uh I did not start finding out about FSR until I probably was starting to search. Every week I would go out and just um Sarcodosis, pulmonary Sarcodosis. Let me see what I can find, because this is ridiculous, that I know it's rare. And at that time, I think it was 200,000 in the US were being affected. But there has to be more. There has to be more that this um can't be just this couple of sites. And luck was on my side and FSR popped up because I was starting to get to that point to where I think I've been doing that for about a couple of months. Uh i was starting to get frustrated because the information was always the same short little info or like you said, the posts that were just depressing me, making feel like, okay, I'm not going to die tomorrow, but I'm going to pass soon. I don't want to hear this anymore, uh but I found that it's our site.
John Carlin: Right. Is there anything else you want to add to this conversation? I appreciate you kind of bearing your soul here with our listeners.
Garrie Farrow: Honestly, if one person okay, not one. But if um more people would, if you're ever finding yourself going, okay, this is discounting your own symptoms and you're thinking, well, it must just be allergies, oh, I'm just tired. And I'm always tired. Sarcoidosis doesn't just impact the lungs. The um heart can be impacted. Your eyes, the skin, bones, you name it. It can um impact the body. And even with I don't have time, I don't have the energy. Just go to that one appointment and talk to your physician, um even if you're not the one having the symptoms. Everybody talks to their friends, everybody talks to their family. And you always hear that common issue with that family member, with that friend, talk to them, get them to go. Because even if it's not Sarcodosis, it could be anything and everything else they need to go in and be seen. And it's not to say that don't trust your doctors, um but if they tell you, okay, we think you have this or we have confirmed this diagnosis. Do your research go out there? The internet is huge. Yes. You're going to run into some information that's when you do more research just because you found one answer, you found one source you don't stick with just that one source. You look at everything as much as you can and get that knowledge for yourself so you know what you're going to have to live with and that helps better prepare you for your next office visit.
John Carlin: Find a doctor that is a specialist in sarcoidosis. Yes, there are lots of doctors who may have one or two Sarcoidosis patients. That's not the same thing.
Garrie Farrow: No, not even close to it. As you are well aware, Sarcidosis is so varied that there's a commonality amongst all of us. But how sarcadosis impacts you is different than how it impacts me and yes, it is a disease of granuloma but how your body takes that granuloma you really need someone who has a breadth of knowledge not just like you said, one or two Z is not enough knowledge for this disease, right?
John Carlin: thank you for joining me on the Sarfighter podcast.
Garrie Farrow: Thank you thank you for having me. I love listening to you. I've watched your podcast before so this is fantastic. This was fun.
John Carlin: Great. Thanks.
Garrie Farrow: Thanks. Bye.
Monday May 09, 2022
Monday May 09, 2022
Sarcoidosis patients have shared many stories with me here on the Sarc Fighter podcast. It got me thinking about expectations. What did we expect from our lives before sarcoidosis? What do we expect now? Do we ever expect to get our old lives back -- and how hard should we try to get there.
Managing expectations can be tough and perhaps frustrating. But it can also be fulfilling.
In Episode 61 of the Sarc Fighter Podcast, I dig in really listen to what some of my guests had to say and look at how they are choosing to manage their lives -- and their expectations.
(Be sure to listen at the end for the Full version of Zombie - The official song of the Sarc Fighter Podcast!)
Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com