Fighting sarcoidosis as well as other rare diseases.
Episodes
Monday Jul 22, 2024
Monday Jul 22, 2024
Zombie is the theme song for the FSR Sarc Fighter podcast. If you listen, you know.
Shortly after I launched the podcast Mark Steier e-mailed me to say he had sarcoidosis and had written and recorded a song about it. I didn't expect much. But the song blew me away, and Mark quickly agreed to allow me to use it as the theme song. You've been hearing it ever since. Meanwhile Mark's health has been up and down, sometimes seriously down. And -- his wife and caregiver Caeleigh, is now stepping up and running the New York City Marathon as an official FSR fundraiser. So she also joins me today.
In addition, podcast "regular" Royce Robertson met me on a bicycling journey across New York State, where I interviewed him about his health and his own fundraising effort through cycle4sarc.
It's a big Episode!
Mark and Caeleigh!
Riding with Royce!
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/
Support Mark's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark
Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
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 Jul 08, 2024
Monday Jul 08, 2024
Renwick Brutus has an unusual name and a story to match. He discovered he had sarcoidosis long ago now he's working through the disease and its complications. Including the time doctors were ready to perform surgery on his brain only to... Well, I'll let Renwick finish the story.
Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
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 Jun 24, 2024
Monday Jun 24, 2024
XTMAB-16, a drug now in clinical trials has been developed by Xentria. In this episode of the FSR Sarc Fighter podcast, Noopur Singh, Vice President of marketing & Patient Affairs, and Tom Matthews, Vice President for Clinical Development join me to explain how XTMAB-16 works in the body as a "referee" to control our body's immune responses. Listen in as we learn more about one of the most promising reasons for hope in the fight against Sarcoidosis.
Show notes:
More about Xentria: https://xentria.com/who-we-are
More about XTMAB-16: https://xentria.com/clinical/xtmab16
Join the Clinical Trial: https://xentria.com/clinical/xtmab16-phase-2
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
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
Tuesday Jun 04, 2024
Tuesday Jun 04, 2024
In Episode 115 of the Sarc Fighter Podcast, Andrea Maione fights to keep things going as she deals with the aftermath of the pandemic while dealing with the increasing onset of Sarcoidosis symptoms.
Show Notes
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/
Super Carlin Brothers on YouTube: https://www.youtube.com/supercarlinbrothers
Jonathan on Instagram: https://www.instagram.com/jonkerlin/
The Popcorn Culture Podcast: https://www.youtube.com/channel/UCHfIbq9thHPC8yrKjAdJgDA
Through the Griffen Door Podcast: https://podcasts.apple.com/us/podcast/through-the-griffin-door/id1708293199
Jonathan's fundraising page: https://stopsarcoidosis.rallybound.org/SuperCarlinBrothers
Royce's Fundraising page: https://stopsarcoidosis.rallybound.org/cycle4sarc
Matthew's Fundraising page: https://stopsarcoidosis.rallybound.org/Member/MyPage/2590390/Mathew-Hall
The FSR Coalition for Clinical Trial Equity: https://www.stopsarcoidosis.org/fsr-launches-the-coalition-for-clinical-trial-equity-to-address-barriers-faced-by-black-patients/
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
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 May 20, 2024
Monday May 20, 2024
In Episode 114 of the FSR Sarc Fighter Podcast, a member of the Super Carlin Brothers shares how he is using his significant social media presence to raise money for the Foundation for Sarcoidosis Research. Yes, that's Carlin -- the same name as mine. In this case it's my oldest son Jonathan -- whose YouTube channel has more than 2-million subscribers. Add to that a big presence on Tik Tok, Instagram, podcasts and other platforms and you have a way to reach, well -- a LOT of people. In this episode Jonathan talks about why he wanted to do an FSR fundraiser, how it's going so far - and of course how YOU can help!
I hope you'll listen in as Jonathan and I share a fun conversation about his idea and what it's like growing up, "Carlin!"
Show Notes
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/
Super Carlin Brothers on YouTube: https://www.youtube.com/supercarlinbrothers
Jonathan on Instagram: https://www.instagram.com/jonkerlin/
The Popcorn Culture Podcast: https://www.youtube.com/channel/UCHfIbq9thHPC8yrKjAdJgDA
Through the Griffen Door Podcast: https://podcasts.apple.com/us/podcast/through-the-griffin-door/id1708293199
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
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 May 06, 2024
Monday May 06, 2024
In Episode 113 of the FSR Sarc Fighter podcast, John is joined by Kinevant Sciences CEO Bill Gerhart and the Senior Director of Patient Advocacy Rayne Rodgers. The team at Kinevant is excited to share the news of the progress they are making with their drug, Namilumab as a potential new therapy for sarcoidosis patients.
SHOW NOTES
Kinevant Sciences: https://kinevant.com/
Namilumab: https://kinevant.com/research/
The original Interview with Bill and Rayne: https://beatsarc.podbean.com/e/episode-69-kinevant-is-working-on-namilumab-a-potential-new-drug-for-sarcoidosis/
Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
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 Apr 22, 2024
Monday Apr 22, 2024
Joining me today on the FSr Sarc Fighter Podcast is Sanjay Shukla, CEO of aTyr Pharma. Sanjay returns to the podcast with a promising update on Efzofitimod, the most promising candidate to become the first drug developed specifically to fight sarcoidosis. Sanjay joins the podcast from Brazil, just one of the countries around the world, where the drug is in clinical trials. He will discuss how much more testing is needed and when the drug could become available to sarcoidosis patients.
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/
Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
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 Apr 08, 2024
Monday Apr 08, 2024
Episode 111 is a special episode of the FSR Sarc Fighter podcast. It's sarcoidosis awareness month -- and the folks who are fighting for us at FSR want to get the word out. So Angela O'Malley and Cathi Davis join me for the show to talk about how they are working behind the scenes to get people to "Say Sarcoidosis." But also on the show is fellow sarc fighter Mathew Hall, who is an Ironman triathlete, who found himself in a hospital bed -- unable even to take a walk down the hall. He joins the show as well to share his story and to talk about his plans to bounce back to the extent he can -- and to use it to raise awareness and some funding for FSR.
Show Notes
Support Mathew https://stopsarcoidosis.rallybound.org/steps-for-sarc-2023/Member/MyPage/6333308/Mathew-Hall
Sarcoidosis awareness Month 2024 https://www.stopsarcoidosis.org/saysarcoidosis/
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/
Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
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 Mar 25, 2024
Monday Mar 25, 2024
In this Episode of the Sarc Fighter podcast, we learn how Walgreens is making Sarcoidosis a priority for its customers. Not only is Walgreens doing a fundraiser for the Foundation for Sarcoidosis Research -- the chain is talking about the disease and spreading the word that sarcoidosis is out there, that patients need help, and that the disease needs to be recognized as a big problem for the medical community. Listen in as Melissa Pharo of Walgreens and Angela O'Malley of FSR join me to talk about how this major pharmaceutical chain recognizes the needs of the sarcoidosis community.
Show Notes:
More on aTyr Pharma: https://atyrpharma.com/
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/
FSR awards $100,000 in Grants: https://www.stopsarcoidosis.org/fsr-awards-100000-in-support-of-cardiac-sarcoidosis/
More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
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 Mar 11, 2024
Monday Mar 11, 2024
In this episode of the FSr Sarc Fighter Podcast, Dr. Laura Runge-Gordon talks about how neurosarcoidosis crept into her life after years of misdiagnosis. She has seen every kind of complication you can imagine -- not to mention doing it all with a stressful job during the pandemic. Meanwhile, Royce Robertson returns with another ambitious fundraiser for sarcoidosis, and the Foundation for Sarcoidosis Research.
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/
Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
MORE FROM JOHN:
John's Reports on AWOL Marine Michael Brown: https://www.wsls.com/news/local/2024/02/01/10-news-exclusive-awol-marine-who-killed-his-stepfather-in-franklin-county-speaks-out/
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