Fighting sarcoidosis as well as other rare diseases.
Episodes
Monday Jan 23, 2023
Monday Jan 23, 2023
Royce Robertson is battling sarcoidosis, and he has a plan to do a cool, two-wheeled fundraiser. Royce has been dealing with sarcoidosis for years. In fact he was one of the first people I ever "met" who also had sarc. He reached out to me after I published a blog abut trying to ride my bike, while medications like Cytoxan and prednisone made it all but impossible. In this episode he shares the details of his battle with sarc, and his plans to take it to the disease from the seat of his bike.
Show Notes:
More on aTyr Pharma: https://atyrpharma.com/
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo
Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
Eat Better and Fight Sarc: Nourish by Lindsey: https://www.nourishbylindsey.com/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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 sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Jan 16, 2023
Monday Jan 16, 2023
Royce Robertson has been through the wringer with sarcoidosis. It's impacted his heart in ways that impact every other aspect of his life. And yet he is scheming for a way to help all of us fight the disease by doing something he loves -- even though sarcoidosis is trying to stand in the way.
Show Notes:
More on aTyr Pharma: https://atyrpharma.com/
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo
Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
Eat Better and Fight Sarc: Nourish by Lindsey: https://www.nourishbylindsey.com/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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 sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Jan 02, 2023
Monday Jan 02, 2023
Dr. John Belperio has been looking at dozens of studies on sarcoidosis, drilling down and figuring out exactly where medical science is with respect to pulmonary sarc. How often is it fatal? What are the best treatments? What can we say about the way sarcoidosis attacks the body? He's published his review in JAMA, the Journal of the American Medical Association, and now shares his findings here on the FSR Sarc Fighter podcast!
Show Notes
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/
Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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 Dec 19, 2022
Monday Dec 19, 2022
Doctors Christian Ascoli and Christen Vagts have done some of the most in-depth research yet when in comes to Sarcoidosis and Covid-19 vaccines. Do they protect Sarc Fighters from the virus? It's a good question, since there is strong evidence to suggest that vaccines against some other diseases are only marginally effective or not effective at all in sarc patients. Doctors Ascoli and Vagts went beyond a study of outcomes, and took a look deep inside the body to see what happens when sarc patients try to fight off the Covid-19 virus. In this episode of the Sarc Fighter Podcast, they describe in layman's terms how they were surprised by the outcome.
Show Notes:
More on aTyr Pharma: https://atyrpharma.com/
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo
Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
The New FSR Initiative
Nourish by Lindsey: https://www.nourishbylindsey.com/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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 sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Dec 05, 2022
Monday Dec 05, 2022
Leanne West felt a bump behind her ear. It was the beginning of her journey with Sarcoidosis that has lasted for over a decade and lingers to this day. In this episode of the FSR Sarc Fighter Podcast, Leeanne, who has an amazing career as a researcher at Georgia Tech, talks about how Sarcoidosis has spread throughout her body, and how she keeps it at bay as best she can.
Show Notes
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/
Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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 Nov 21, 2022
Monday Nov 21, 2022
FSR Board chair Dr. Louise Perkins and CEO Mary McGowan say we are closer than ever to major breakthroughs in the treatment of Sarcoidosis. In Episode 75 of the FSR Sarc Fighter Podcast, they join me to talk about all the progress that is being made on may fronts -- and how we can all participate in keeping the momentum going.
Show Notes:
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
FSR Snowflake Stories: https://www.stopsarcoidosis.org/snowflake-stories/
The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/
Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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 Nov 07, 2022
Monday Nov 07, 2022
In Episode 74 of the Sarc Fighter Podcast we take a deep dive into the reality that Sarcoidosis in more prevalent in people of color, but they are less likely to participate in clinical trials. That's a problem for medical professionals who are trying to help solve the sarcoidosis riddle, to find more effective treatments and help more people.
Why is that?
Three guests join me today to talk about it. They share their thoughts and ideas about the reluctance of patients to participate often because of trust issues, and bias on behalf of medical professionals to recruit African Americans for trials.
- Dr. Ogugua Obi of the Brody School of Medicine at East Carolina University in North Carolina.
- Kathryn Washington, a sarcoidosis patient and member of the FSR ACTe Now Patient Advisory Committee
- Calvin Harris, sarcoidosis patient and a member of the ACTe Now Patient Advisory Committee
Show Notes
The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/
Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg
More on aTyr Pharma: https://atyrpharma.com/
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo
FSR Webpage on Financial planning for life with Sarc: https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
The New FSR Initiative
Nourish by Lindsey: https://www.nourishbylindsey.com/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
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 Oct 24, 2022
Monday Oct 24, 2022
The Foundation for Sarcoidosis Research is looking for people who want to help in the fight. In 2022 FSR announced the Global Sarcoidosis Clinic Alliance - a member program of clinics, hospitals, and individual providers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. These providers, such as the Cleveland Clinic, are among the top care centers for Sarcoidosis in the United States.
FSR is looking for the right people to lead support groups and other patient-focused activities at each center. In this episode of the Sarc Fighter podcast, Mindy Buchanan of FSR and Rhonda Jenkins of the Cleveland Clinic join me to talk about the types of people they are searching for and how to get more information.
Show Notes
Kinevant Clinical Trial information: https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237
FSR Webpage on Financial planning for life with Sarc: https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
The New FSR Initiative
Nourish by Lindsey: https://www.nourishbylindsey.com/
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
Wednesday Oct 19, 2022
Wednesday Oct 19, 2022
In Episode 72 of the Sarc Fighter podcast, Regina Gordon, an FSR Advocate shares the story of how sarcoidosis has curtailed her life for decades. She bravely shares how the disease has spread from her lungs to her skin and lymph nodes and other parts of her body. But she is not willing to give up. She's improved her outlook and even earned two college degrees. Listen in to hear how she is getting it done! And be sure to listen at the end when she shares a poem she wrote about the battle!
Above: One of my Elk photos! And of course, above that Regina and I talking on the podcast!
Regina's Facebook page: https://www.facebook.com/groups/422755127748559
aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo
FSR Webpage on Financial planning for life with Sarc: https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
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 Sep 26, 2022
Monday Sep 26, 2022
Andrew Brandt has been suffering from sarcoidosis for more than five years. Lungs. Nervous system. Skin. And yet, he runs every day. And by that, I mean EVERY day. No matter how bad he feels. He will reveal his impressive streak during the interview. In the meantime, he is using programs offered by his company -- and his leadership skills, to raise serious money for the Foundation for Sarcoidosis Research. In this episode of the FSR Sarc Fighter podcast, Andrew tells his story, and we will also hear from FSR Development Director Angela Freelander, who will not only thank Andrew -- but explain why his gift is so important to the greater good.
#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