Fighting sarcoidosis as well as other rare diseases.
Episodes
Monday May 10, 2021
Monday May 10, 2021
Nadia Silvera may need a double lung transplant because of sarcoidosis. Nadia reached out to the Sarc fighter podcast after hearing some of the stories you are telling. Lioke many people she limped along with Sarcoidosis for years, not realizing how truly serious it might be. Now she is staring down the face of a serious procedure that may save her life, but will change it forever. Listen as she tells the story of not wanting to deal with the side effects of the drugs, while not knowing that sarc was slowly taking over her lungs.
Also I will update you on the elimination diet and my recent bout with a tumor in my bladder.
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
Nourish by Lindsey: https://www.nourishbylindsey.com/
https://www.healthline.com/nutrition/elimination-diet
Meet Lindsey Norenberg https://www.nourishbylindsey.com/about
Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451
Just Thrive Probiotics https://justthrivehealth.com/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday May 03, 2021
Monday May 03, 2021
As part of Sarcoidosis Awareness month, the Foundation for Sarcoidosis Research asked me to host a Town Hall meeting on the topic of prednisone with a panel that included Jessica Reid, a fellow sarc fighter, who has faced years of treatment with prednisone, Dr. Elliott Couser Chair of FSR's Scientific Advisory Board, and Dr. Sanjay Shukla CEO of aTyr Pharma which is working on a steroid-sparing drug that may offer relief for patients so they do not have to endure the terrible side effects from prednisone.
FSR asked me to host the event, which I gladly did after suffering from two years of prednisone therapy.
Here is the news release on the event.
Watch the Predisone Town Hall on You Tube 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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Apr 26, 2021
Monday Apr 26, 2021
Nourish by Lindsey: https://www.nourishbylindsey.com/
https://www.healthline.com/nutrition/elimination-diet
Meet Lindsey Norenberg https://www.nourishbylindsey.com/about
Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451
Just Thrive Probiotics https://justthrivehealth.com/
SAN DIEGO, April 20, 2021 (GLOBE NEWSWIRE) -- aTyr Pharma, Inc. (Nasdaq: LIFE), a biotherapeutics company engaged in the discovery and development of innovative medicines based on novel biological pathways, and the Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients, today announced that they will hold a Virtual Town Hall on Steroids and Sarcoidosis to discuss treatment options and strategies for patients living with sarcoidosis. The event will be held on Tuesday, April 27, 2021 at 12:00pm ET / 9:00am PT.
The Town Hall discussion will feature a panel of leading experts related to sarcoidosis treatment and advocacy, including:
- John Carlin (Moderator) – Host, Sarc Fighter Podcast, FSR Patient Advocate and member of FSR’s Patient Advisory Committee
- Jessica Reid, RN, FNP – FSR Patient Navigator for Sarcoidosis
- Elliott Crouser, MD – Professor of Pulmonology, Critical Care and Sleep Medicine, The Ohio State University and Chair of the FSR Scientific Advisory Board
- Sanjay S. Shukla, MD, MS – President and CEO, aTyr Pharma
Registration is open to anyone who wishes to attend. For more information and to register, please visit FSR’s website at https://www.stopsarcoidosis.org/steroids-and-sarcoidosis-town-hall-meeting/. Following the event, a replay will be available on the aTyr website at www.atyrpharma.com.
“We look forward to participating in this important discussion with FSR and other leading experts regarding current treatments for sarcoidosis and the need for new therapeutic options with increased efficacy and reduced side effects for this chronic, debilitating disease,” said Sanjay S. Shukla, M.D., M.S., President and Chief Executive Officer of aTyr. “While corticosteroids are a treatment option for many sarcoidosis patients, they have limited efficacy and may have serious side effects when used long-term. ATYR1923 offers a potential new mechanism to resolve lung inflammation associated with pulmonary sarcoidosis, a form of sarcoidosis in the lungs, and may be a potential alternative to steroid treatment that can improve patient outcomes with reduced toxicity.”
“We are pleased to collaborate with aTyr for this important event on steroids and sarcoidosis,” said Mary McGowan, CEO of FSR. “The mission of FSR is to support patients through research and education, so it’s especially timely to have this discussion during Sarcoidosis Awareness Month as part of our ongoing efforts to discover possible treatments.”
Sarcoidosis is an inflammatory disease characterized by the formation of granulomas, clumps of inflammatory cells, in one or more organs in the body. Sarcoidosis in the lungs is called pulmonary sarcoidosis and occurs in more than 90% of all sarcoidosis patients. Pulmonary sarcoidosis is a major form of interstitial lung disease, a group of immune-mediated disorders which can cause progressive fibrosis, or scarring, of lung tissue. Approximately 150,000 to 200,000 Americans live with pulmonary sarcoidosis. The prognosis for patients with pulmonary sarcoidosis ranges from benign and self-limiting to chronic, debilitating disease, permanent loss of lung function and death. Current treatment options include corticosteroids and other immunosuppressive therapies, which have limited efficacy and are associated with serious side effects when used long-term that many patients cannot tolerate.
About ATYR1923
aTyr is developing ATYR1923 as a potential therapeutic for patients with inflammatory lung diseases. ATYR1923, a fusion protein comprised of the immuno-modulatory domain of histidyl tRNA synthetase fused to the FC region of a human antibody, is a selective modulator of Neuropilin-2 that downregulates the innate and adaptive immune response in inflammatory disease states. aTyr recently completed enrollment in a proof-of-concept Phase 1b/2a trial evaluating ATYR1923 in patients with pulmonary sarcoidosis. This Phase 1b/2a study is a multi-ascending dose, placebo-controlled, first-in-patient study of ATYR1923 that has been designed to evaluate the safety, tolerability, steroid sparing effect, immunogenicity and pharmacokinetic profile of multiple doses of ATYR1923. In response to the COVID-19 pandemic, aTyr completed a Phase 2 clinical trial with ATYR1923 in COVID-19 patients with severe respiratory complications. This Phase 2 study was a randomized, double blind, placebo-controlled study that was designed to evaluate the safety and preliminary efficacy of a single dose of ATYR1923.
About aTyr
aTyr is a biotherapeutics company engaged in the discovery and development of innovative medicines based on novel biological pathways. aTyr’s research and development efforts are concentrated on a newly discovered area of biology, the extracellular functionality and signaling pathways of tRNA synthetases. aTyr has built a global intellectual property estate directed to a potential pipeline of protein compositions derived from 20 tRNA synthetase genes and their extracellular targets. aTyr’s primary focus is ATYR1923, a clinical-stage product candidate which binds to the Neuropilin-2 receptor and is designed to down-regulate immune engagement in inflammatory lung diseases. For more information, please visit http://www.atyrpharma.com.
About the Foundation for Sarcoidosis Research (FSR)
Established in 2000, The Foundation for Sarcoidosis Research (FSR) is the leading international nonprofit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients. Since inception, FSR has fostered over $5 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands. For more information, please visit www.stopsarcoidosis.org.
Forward-Looking Statements
This press release contains forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. Forward-looking statements are usually identified by the use of words such as “anticipates,” “believes,” “estimates,” “expects,” “intends,” “may,” “plans,” “projects,” “seeks,” “should,” “will,” and variations of such words or similar expressions. We intend these forward-looking statements to be covered by such safe harbor provisions for forward-looking statements and are making this statement for purposes of complying with those safe harbor provisions. These forward-looking statements include statements regarding potential therapeutic benefits and applications of ATYR1923; timelines and plans with respect to certain development activities (such as the timing of data from clinical trials); and certain development goals. These forward-looking statements also reflect our current views about our plans, intentions, expectations, strategies and prospects, which are based on the information currently available to us and on assumptions we have made. Although we believe that our plans, intentions, expectations, strategies and prospects, as reflected in or suggested by these forward-looking statements, are reasonable, we can give no assurance that the plans, intentions, expectations or strategies will be attained or achieved. All forward-looking statements are based on estimates and assumptions by our management that, although we believe to be reasonable, are inherently uncertain. Furthermore, actual results may differ materially from those described in these forward-looking statements and will be affected by a variety of risks and factors that are beyond our control including, without limitation, uncertainty regarding the COVID-19 pandemic, risks associated with the discovery, development and regulation of our product candidates, the risk that we or our partners may cease or delay preclinical or clinical development activities for any of our existing or future product candidates for a variety of reasons (including difficulties or delays in patient enrollment in planned clinical trials), the possibility that existing collaborations could be terminated early, and the risk that we may not be able to raise the additional funding required for our business and product development plans, as well as those risks set forth in our most recent Annual Report on Form 10-K, Quarterly Reports on Form 10-Q and in our other SEC filings. Except as required by law, we assume no obligation to update publicly any forward-looking statements, whether as a result of new information, future events or otherwise.
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Source: aTyr Pharma, Inc.
Monday Apr 12, 2021
Monday Apr 12, 2021
As part of Sarcoidosis Awareness month, I wanted to tell you a personal story that happened just today, the day before World Sarcoidosis Awareness day -- in which a very good doctor had no knowledge of sarcoidosis... And how this might have an impact on my own diagnosis with a new medical problem. I'll also give you an update on how the Elimination Diet is going and lots of ways you can participate in Sarcoidosis Awareness Month!
FSR's fantastic page that includes the media tool kit! https://www.stopsarcoidosis.org/awareness/
- April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs.
- April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more!
- April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease.
April - April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time
- April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR.
- Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health.
- April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents. This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative. Please keep an eye on the events calendar for updates on the time and date for this event.
Nourish by Lindsey: https://www.nourishbylindsey.com/
https://www.healthline.com/nutrition/elimination-diet
Meet Lindsey Norenberg https://www.nourishbylindsey.com/about
Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451
Just Thrive Probiotics https://justthrivehealth.com/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Apr 05, 2021
Monday Apr 05, 2021
April is the month we all re-double our efforts to let the world know we are here. To tell the world that sarcoidosis exists, that it's a problem. That it's a disease with no known cause or cure and that it messes with our lives in often unspeakable ways. Defense number one for this disease is the Foundation for Sarcoidosis Research. In April the Foundation is pulling out all the stops to shout it from the rooftops -- and you can help! FSR VP for Research and Strategic Partnerships Tricha Shivas joins me on this episode of the Sarc Fighter Podcast to talk about the many, many events taking place in April to help spread awareness of Srcoidosis.
Don't Forget April is Sarcoidosis Awareness Month! Here are some links to FSR activities!
April’s Sarcoidosis Awareness Month Events
- April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs.
- April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more!
- April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease.
April - April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time
- April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR.
- Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health.
- April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents. This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative. Please keep an eye on the events calendar for updates on the time and date for this event.
Nourish by Lindsey: https://www.nourishbylindsey.com/
https://www.healthline.com/nutrition/elimination-diet
Meet Lindsey Norenberg https://www.nourishbylindsey.com/about
Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451
Just Thrive Probiotics https://justthrivehealth.com/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Mar 29, 2021
Monday Mar 29, 2021
Sarc Fighter Susan Bassi was a very active outdoors person who once thought nothing of hiking 10 miles. Then Sarcoidosis raised its ugly head, and today she is trying to adjust to a life where she can no longer pursue her greatest joys.
Susan is an Advocate for the Foundation for Sarcoidosis Research, helping other patients find their way through the disease. And she brings special insight to the task because she is living it. Listen in as she talks about how sarc showed up in her joints and just kept spreading.
Don't Forget April is Sarcoidosis Awareness Month! Here are some links to FSR activities!
April’s Sarcoidosis Awareness Month Events
- April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs.
- April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more!
- April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease.
April - April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time
- April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR.
- Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health.
- April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents. This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative. Please keep an eye on the events calendar for updates on the time and date for this event.
Nourish by Lindsey: https://www.nourishbylindsey.com/
https://www.healthline.com/nutrition/elimination-diet
Meet Lindsey Norenberg https://www.nourishbylindsey.com/about
Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451
Just Thrive Probiotics https://justthrivehealth.com/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Mar 15, 2021
Monday Mar 15, 2021
For KevinMcDevitt, sarcoidosis went from an annoyance in his golf game to a life-threatening heart condition. In Episode 30 of the Sarc Fighter podcast, Kevin tells about how things went from not so bad to awful very quickly. Yet he is fighting back and 2021 promises to be much better for him than 2020.
Like many people, Kevin has fought his battle on two fronts -- with traditional medicine and an adjustment to his diet and lifestyle. In this podcast Keven shares the details of his harrowing battle with sarcoidosis and all he is doing to get his body and his life back under control.
Also in this episode, I'll tell you about my attempt at the Elimination Diet. As of this recording, I am 2/3 of the way through the 3 week diet that forbids sugar, dairy and grains. Plus a bunch of other stuff. I am doing this under the guidance of Lindsey Norenberg, of Nourish by Lindsey -- whose husband, Ryan joined me on Episode 27 to talk about how he is fighting the inflammation in his body through the use of an anti-inflammatory diet as well as CBD oil. I hope you enjoy my update and continue to follow along with my progress as I slowly begin to add foods back to see what might trigger an inflammatory response!
Here are links mentioned in the podcast, beginning with those from Kevin.
Parasarcoisosis::
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Background on Elimination Diet: https://www.healthline.com/nutrition/elimination-diet
Monday Mar 01, 2021
Monday Mar 01, 2021
In Episode 29 of the Sarc Fighter podcast, Susie Torres tells the story of how hard it was to determine what was wrong with her. Doctors mistook her illness for many other problems -- once even sending her to a psychiatric hospital.
Note: I first met and interviewed Susie in early 2020 -- pre-pandemic. Susie writes that since we did the interview she has had gastric bypass surgery and lost 100 lbs! She also writes that her sarcoidosis is in remission, but she is still battling another rare disease -- possibly Sjogren’s Syndrome (SHOW-grins), which is is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth. The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus.
Utah Sarcoidosis Support https://www.facebook.com/groups/2028388207424165/
Nourish by Lindsey: https://www.nourishbylindsey.com/
https://www.healthline.com/nutrition/elimination-diet
Meet Lindsey Norenberg https://www.nourishbylindsey.com/about
Leaky Gut https://www.health.harvard.edu/blog/leaky-gut-what-is-it-and-what-does-it-mean-for-you-2017092212451
Just Thrive Probiotics https://justthrivehealth.com/
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Feb 15, 2021
Monday Feb 15, 2021
Andrena Johnson is fighting back by making a documentary on Sarcoidosis called Project Purple: Mission Sarcoidosis Awareness. Andrena is a a Hollywood actor and Director who is also fighting neurosarcoidosis. Frustrated by how it was impacting her career, Andrena produced a 12 minute documentary with essentially no budget. But thanks to friends in high places in the industry, she was able to get it on Prime Video where people began watching it. Before long she realized she needed to make a big time, full length documentary about sarcoidosis. In this episode of the Sarc Fighter podcast, Andrena details her own journey with sarc as well as her acting career and how she started her current documentary project.
Andrena on IMDB https://www.imdb.com/name/nm4315892/bio?ref_=nm_ov_bio_sm
Project Purple Facebook page https://www.facebook.com/Sarcoidawarenessfilm/
Andrena in Coffin https://www.imdb.com/title/tt1667416/fullcredits?ref_=tt_cl_sm#cast
Andrena's production company on FB https://www.facebook.com/ascreativeproduction/
Surviving Sarcoidosis mini-documentary https://www.amazon.com/Surviving-Sarcoidosis-Deborah-Rice/dp/B082DR6N88
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
You can listen on You Tube as well. https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/
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
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Monday Feb 01, 2021
Monday Feb 01, 2021
Ryan Norenberg is fighting cardiac sarcoidosis with a one-two punch that includes the use of CBD oil and a holistic diet. Many people who have appeared on the Sarc Fighter podcast have been frustrated by the lack of choices when it comes to treatment of their disease. There is a menu of medicines that people are familiar with ranging from prednisone to Remicade to Imuran and others. For many people, these are only marginally effective.
So you ask yourself, "What if I just ate better?" or "Should I avoid certain foods?"
Ryan says yes. In fact his wife is now a certified Holistic Nutritionist.
In addition, Ryan has turned to a newer alternative - CBD oil. In this podcast, he explains how he uses this over-the-counter therapy to reduce inflammation.
Give the podcast a listen and see if there isn't an opportunity for you to make some lifestyle adjustments, that could improve your situation.
Additional notes from Ryan!
Lindsey Norenberg's Website www.nourishbylindsey.com
Realm of Caring website https://realmofcaring.org/
Here are a couple related to the Omega6/3 topic:
https://pubmed.ncbi.nlm.nih.gov/12442909/
This is an abstract to a research document that one would need to pay for but you can get the idea of it in the abstract provided.
https://www.healthline.com/nutrition/optimize-omega-6-omega-3-ratio
This is a good one I found geared more towards the layman. It explains the importance while providing some specific information about different foods and sources of omega 6’s and 3’s.
As it is with CBD, it is important to get fish oil from a reliable source. As it is unregulated, there is a potential of high mercury content. Additionally, it is recommended to consume in a true liquid oil form that is stored and shipped at cooled temperatures vs capsules that have been on a store or warehouse shelf for unknown time at unknown temperatures. I currently use Nordic Naturals Ultimate Omega liquid available on Amazon and shipped with a cold pack. I take 2800 mg/daily (1 teaspoon).
The probiotic I take is Ther Biotic complete. This one has 12 strains of bacteria.
Here are some related to cannabinoid therapy:
Cannabinoids-as-novel-anti-inflammatory-drugs.pdf
This one focuses more on THC than CBD specifically but provides a good overview of our endocannabinoid system and how it works.
Here is a group related to inflammation
Research Library - Realm of Caring Foundation
Here is a group of research articles related to cannabinoids and their impact on immune function.
https://store.healthylivingshop.com/
Here is a link to the Cleveland Clinic Healthy Living Shop. The supplements on this site have been vetted by the CC and they consider trustworthy and reliable. However, that doesn’t mean that there are not other good options out there but the buyer needs to beware.
https://www.charlottesweb.com/
This is my trusted source of CBD. There are several other good ones out there as well. They offer different types (gummies, oil, lotions…) and different ratios of CBD/THC ranging from 100% CBD isolate to full plant extract containing up to the .03% federal limit on THC content.
Here is an article I found describing the legislation that established the hemp laws.
Ryan also advises:
.03% THC adds up and is not completely negligible in its effects at higher doses. The Realm of Caring can offer some support here as well. If you do decide to try CBD, I recommend you read up on the “entourage effect”. You can find some articles on the Realm of Caring Research Library page. Basically, studies are limited but there is evidence to believe that CBD is more effective in the presence of THC and other cannabinoids vs isolated by itself.
Charlotte’s Web offers discounted pricing if you register with them and offers further discounts if you subscribe to recurring deliveries. I have found the subscription to be the most cost-effective way to get it.