Sarc Fighter: Living with Sarcoidosis and other rare diseases

Episode 121 | Wade Tomlinson needed a lung transplant

The combination of Sarcoidosis and Covid proved too much for Wade Tomlinson.  His lungs were wracked with damage from sarcoidosis.  So when he got covid it was the punch his body couldn't handle and he needed to take drastic action.  Wade got on several waiting lists for a lung transplant and then waited for the call.  In episode 121 of the FSr Sarc Fighter Podcast, Wade recounts the moment the call came in and the series of events that led to him becoming a recipient.  Let's just say it wasn't clear-cut.  Listen in as Wade tell his story and brings up to date on how he is feeling six months after his surgery.

Also in this podcast -- FSR's Stephanie Mizell joins me for a quick explaination of the Foundation's most recent fundraiser!

 

Show Notes:

Sign up for FSR's 100-Mile Challenge: https://givp.nl/register/MGEluUUb 

Wade's Go Fund Me: https://www.gofundme.com/f/support-wade-allie-medical-life-expenses?attribution_id=sl:1bcda970-9100-46d6-884b-82c1a3ee4239&utm_campaign=man_sharesheet_dash&utm_medium=customer&utm_source=copy_link

 

Support Mark Steier's wife, Caeleigh:  https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark

 

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Episode 120 | Dr. Kamal Bharucha is a researcher who found himself a heartbeat away from real trouble

Dr. Kamal Bharucha is a Pediatrician-Scientist, Clinical Development Leader and Biotech Startup Advisor in the rare disease space.  And suddenly he found himself dealing with a rare disease - sarcoidosis.  He says he was feeling fine and went for a routine check-up and discovered everything was far from fine.  Dr. Bharucha describes his journey through diagnosis and discovery as he fights back against the disease.  But what does a researcher do when presented with something like this?  They present a poster to colleagues urging them to consider pushing the use of heart rate monitors in more people -- so heart issues become apparent much sooner!

Below is the poster he present to the American Thoracic Society entitled Multisystemic Sarcoidosis Culminating in Asymptomatic Complete Heart Block.

 

 

 

 

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/

Kamal's Papers on Sarcoidosis: 

https://link.springer.com/article/10.1007/s11606-021-07310-6

https://www.kevinmd.com/2023/08/heart-disease-in-the-shadows-a-closer-look-at-cardiac-sarcoidosis.html

https://www.linkedin.com/in/kamal-bharucha/

Support Mark Steier'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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Episode 119 | Jessica Soules deals with Neurosarcoidosis

When it comes to sarcoidosis, one of the rarest forms is neurosarcoidosis or sarcoidosis in the nervous system.  That's what Jessica Soules is dealing with.  A long-time fitness instructor, sarc has taken the bounce out of her step.  In addition, Jessica is trying to spread the message of another rare disease that claimed the life of a friend.  In this episode she talks about her own struggles with sarcoidosis and a little about her group called Jonnie's Goodguys -- named after her friend who suddenly dropped dead one day while at work. 

 

Show Notes:

Jonnie's Goodguys: https://jonniesgoodguys.org/

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:

Biking 4 Boomers https://www.youtube.com/@biking4boomers

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

 

 

 

 

 

 

 

 

Episode 118 | Mark Steier -- Who wrote the Sarc Fighter theme song has an unpdate, and his wife Caeleigh goes long for FSR

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

 

 

 

 

 

 

 

 

Episode 117 | Renwick Brutus tried to write his own insurance policy. But sarcoidosis intervened.

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

 

 

 

 

 

 

 

 

Episode 116 | Xentria has a drug - XTMAB-16 that shows promise in fighting Sarcoidosis

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

 

 

 

 

 

 

 

 

 

 

Episode 115 | Sarc Fighter Andrea Maione has both sarcoidosis and long COVID. It's no party.

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

 

 

 

 

 

Episode 114 | Influencer Jonathan Carlin uses YouTube and other social media for an FSR Fundraiser

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

 

 

 

 

Episode 113 | Kinevant Sciences makes progress with its drug Namilumab

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

 

 

 

 

 

 

 

 

 

 

 

 

Episode 112 | aTyr is getting closer to a new drug to fight sarcoidosis.

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