Sarc Fighter: Living with Sarcoidosis and other rare diseases

In this episode of the FSR Sarc Fighter podcast I share a new study from Japan that compared people with systemic cardiac sarcoidosis -- those people who have cardiac sarc as well as other organ involvement -- with those who have only cardiac involvement.  The research found that if you have it only in your heart it may actually be more serious.  Also, FSR just released information that will give you a sigh of relief if you want to participate in a clinical trial.   I also riff a bit about election night 2024, covering a Donald Trump rally, and a speech on the difficulty of sharing scientific data with the viewing public on TV news.

Show notes

Sarcoidosis news report on cardiac sarcoidosis: https://sarcoidosisnews.com/news/poorer-outcomes-seen-isolated-cardiac-sarcoidosis/

Department of Labor and Clinical Trial participation: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/

My story on the Trump Rally:https://www.wsls.com/news/local/2024/11/03/local-representatives-speak-at-trumps-rally-in-salem/

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

MORE FROM JOHN:

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

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  [email protected]

In Episode 125 of the FSR Sarc Fighter Podcast, a look into the great success of the Externally Led Patient Focused Drug Development Meeting with the FDA.  John co-hosted the meeting with Mary McGowan, the CEO of the Foundation for Sarcoidosis Research as you - the sarcoidosis community joined in to share your stories with the FDA to let the policy and decision makers know what you are dealing with.  How hard it is to live with this disease and how few medicines are available to treat it.  The meeting happened Monday, October 28th in Washington, D.C..  In this episode of the podcast I'll give you a look behind the scenes as months of work came together in just a couple of days for a fantastic presentation to the FDA.  #sarcoidosis

Show notes

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

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/

Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers

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  [email protected]

On October 28th the Sarcoidosis world -- led by the Foundation for Sarcoidosis Research will have perhaps its best chance ever to tell the FDA what's going on with us.  On that day, FSR is leading an event called an Externally Led Patient Focused Drug Development discussion.  On that day from 10 am to 3 pm Patients, caregivers, medical experts and maybe you, will be telling the FDA what our lives are like.  How insufficient current medications can be.  And, how badly we deserve new treatments and yes even a cure for sarcoidosis.  In this episode of the FSR Sarc Fighter Podcast, FSR CEO Mary McGowan joins me to talk about this session with the FDA, what it looks like, why it's important and how you can join in.  Please give this podcast a listen -- and please sign up now to join in on October 28th.

Show notes

Join the Externally-Led Patient Focused Discussion before the FDA:  https://www.stopsarcoidosis.org/events/fsr-externally-led-patient-focused-drug-development-meeting/

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  [email protected]

Stephanie Mizell has good days and bad days.  And she doesn't know what it will be until she wakes up and breathes.  Such is the life of a young mother with sarcoidosis.  Shortly after her diagnosis, Stephanie learned that FSR needed a person with her marketing talents.  She applied for the job -- and now she is helping all of us by spreading the word about sarcoidosis with her professionalism and skills.  Listen in as she tells how she learned of the job with the Foundation, and how she now uses all the tricks of the trade to make sure our social media presence is felt by as many people as possible.

Show notes

Join the Externally-Led Patient Focused Discussion before the FDA:  https://www.stopsarcoidosis.org/events/fsr-externally-led-patient-focused-drug-development-meeting/

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

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  [email protected]

Lindsay Lawrence was the picture of health.  Active, mother of two children, healthy eater. All the things.  But something just wasn't right.  It got worse and worse until her doctor told her that her lungs were being damaged by sarcoidosis.  In the time since diagnosis, she has been searching for the medications that work, while sarcoidosis creeps into other parts of her body.  In this episode of the FSR Sarc Fighter Podcast, Lindsay shares her story, including her terrible bout with prednisone. 

Lindsey -- with facial swelling from prednisone.

Show Notes

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

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  [email protected]

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 explanation 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  [email protected]

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  [email protected]

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  [email protected]

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  [email protected]

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  [email protected]