Sarc Fighter: Living with Sarcoidosis and other rare diseases

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]

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  [email protected]

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  [email protected]

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  [email protected]