Sarc Fighter: Living with Sarcoidosis and other rare diseases

Episode 135 | April is Sarcoidosis Awareness Month!

April is Sarcoidosis Awareness Month, and it's time to let people know that we are all "Facing Sarcoidosis Together,"  which is the theme for 2025.  In this edition of the FSR Sarc Fighter podcast, I talk with Cathi Davis, Director of Communication and Marketing for FSR, along with fellow sarc fighters and volunteers Theresa Govan and Susan D'Agostino.  Hear about all FSR has planned for April and how sarcoidosis has impacted Susan and Theresa's lives.

Show Notes:

• FSR Virtual Support Group: https://www.stopsarcoidosis.org/fsr-sarcoidosis-support-group/
• 2025 Awareness Month page: https://www.stopsarcoidosis.org/sarcoidosis-awareness-month/
• Mindfulness & Meditation Wellness Webinar Series: https://www.stopsarcoidosis.org/wellness-webinar-series/

   

  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

  #sarcoidosis #sarcoidosisawareness

 

 

 

Episode 134 | Dr. Ravi Karra of Duke University discusses his research on Cardiac Sarcoidosis and its causes.

The Foundation for Sarcoidosis Research recently awarded two grants to further our knowledge of cardiac sarcoidosis.  One of them went to Dr. Ravi Karra, MD, MHS, Associate Professor of Medicine and Pathology at Duke University.  Dr. Karra is investigating what causes cardiac sarcoidosis, and the best way to treat it.  He joins me on the Sarc Fighter Podcast to talk about his findings and his theory as to what might cause sarcoidosis in some people. 

Show notes:

FSR awards two grants for research on cardiac sarcoidosis: https://www.stopsarcoidosis.org/fsr-doubles-investment-in-cardiac-sarcoidosis-research-with-200000-in-grants-to-advance-diagnostic-and-treatment-breakthroughs/

Duke University Sarcoidosis Clinic: https://medicine.duke.edu/divisions/pulmonary-allergy-and-critical-care-medicine/our-programs-and-centers/sarcoidosis-clinic

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

#sarcoidosis #sarcoidosisawareness #

 

 

 

 

Episode 133 | FSR funds new research and an email from New Zealand

In this Episode of the FSR Sarc Fighter podcast, Spring has sprung in Virginia, and John is fueling his optimism for the season with news from the Sarcoidosis world, including a rare disease video series that spotlights sarcoidosis and the announcement of some major grants from FSR to Sarcoidosis researchers.

 

Show Notes:

Watch the video featuring Kerry Wong and Dr. Al on how to deal with Sarcoidosis and talk about it in a meaningful way. 

https://bionews.com/keepin-it-rare/

More about the FSR research Grants: https://www.globenewswire.com/news-release/2025/02/03/3019714/0/en/Foundation-for-Sarcoidosis-Research-FSR-Announces-300-000-in-Grant-Funding-to-Improve-Diagnosis-and-Treatment-of-Sarcoidosis.html

 

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  carlinagency@gmail.com

#sarcoidosis #sarcoidosisawareness #

Episode 132 | Dr. Arthur Yee on the history of sarcoidosis and a call out to rheumatologists everywhere

Dr. Arthur Yee of Hospital for Special Surgery in New York City, believes rheumatologists are uniquely qualified to treat Sarcoidosis -- yet many of them shy away from sarc patients.  In this episode of the FSR Sarc Fighter Podcast, Dr. Yee explains why sarc patients can be scary to doctors.  He also looks at the history of Sarcoidosis and the treatment patterns that have evolved over time.  He also explains what beryllium miners have in common with people who have had tattoos -- and how all of that relates to sarcoidosis. 

 

Show Notes:

More on Dr. Arthur Yee: https://www.hss.edu/physicians_yee-arthur.asp

What is a TNF inhibitor: https://www.webmd.com/rheumatoid-arthritis/tnf-inhibitor-inflammation

Why Rheumatologists need to be more active in treating Sarcoidosis Patients: https://www.the-rheumatologist.org/article/the-rheumatologists-role-in-sarcoidosis/?singlepage=1

 

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  carlinagency@gmail.com

#sarcoidosis #sarcoidosisawareness #

 

 

 

 

 

Episode 131| A well-designed and successfully conducted clinical trial with very clear negative results is the second-best outcome in drug development

Despite high hopes and promise from the drug Namilumab, Kinevant Sciences is reporting that the drug was not effective in treating Sarcoidosis.  A well executed clinical trail showed that the drug simply didn't make a difference for sarcoidosis patients.  In this episode of the FSR Sarc Fighter Podcast, two of the leaders at Kinevant join me to talk about the results of the clinical trial and to look at what science learned from the study.  Also joining me is FSR CEO Mary McGowan who helps shape the perspective of the outcome and to help us understand that while Namilumab did not turn out to be the drug we hoped, there is still a path forward in the fight against Sarcoidosis.

Also have you seen the new Netflix mini-series in which one of the characters has Sarcoidosis called No Good Deed?  I have.  And I'll tell you what you need to know, without any spoilers.

#sarcoidosis #namilumab #kinevant #sarcoidosisawareness #NoGoodDeed

 

 

Show Notes:

News Release from Kinevant: https://investor.roivant.com/news-releases/news-release-details/roivant-announces-topline-results-phase-2-resolve-lung-study

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  carlinagency@gmail.com

 

 

Episode 130 | New Year, New Life.

It's early January and I'm starting a new job -- reflecting on both my early days and the days and years ahead -- while pondering what it all means with sarcoidosis lurking in the background. 

 

 

 

Show notes:

Kerry Wong on The new Netflix show No Good Deed:   https://sarcoidosisnews.com/columns/sarcoidosis-storyline-netflixs-no-good-deed-true-patients/

Kerry Wong appears on Episode 10: https://beatsarc.podbean.com/e/episode-10-kerry-wong-talks-about-how-sarc-stole-her-life/

News Release on protection for clinical trial participants: https://www.globenewswire.com/news-release/2024/11/16/2982368/0/en/Foundation-for-Sarcoidosis-Research-FSR-receives-confirmation-from-the-Department-of-Labor-DOL-ensuring-patient-access-to-FMLA-for-participation-in-clinical-trials.html

Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/

Center in the Square in Roanoke: https://www.centerinthesquare.org/

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  carlinagency@gmail.com

 

 

 

 

 

 

 

 

 

 

 

Episode 129 | Karen Coleman is a dancer who had to slow her feet thanks to sarcoidosis

Sarcoidosis snuck up on Karen Coleman.  A dance instructor, she couldn't figure out why she wasn't keeping up in her jazzercize class.  After plenty of time with doctors and more CAT Scans than she would like, she discovered she was suffering from pulmonary Sarcoidosis. 

 

 

 

Show notes:

News Release on protection for clinical trial participants: https://www.globenewswire.com/news-release/2024/11/16/2982368/0/en/Foundation-for-Sarcoidosis-Research-FSR-receives-confirmation-from-the-Department-of-Labor-DOL-ensuring-patient-access-to-FMLA-for-participation-in-clinical-trials.html

Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/

Holiday Pop-up Store: https://shop.printyourcause.com/campaigns/foundation-for-sarcoidosis-research-store/categories/crewnecks?accesstoken=fedd7e11-09bc-4960-9b41-68a91f851484

Center in the Square in Roanoke: https://www.centerinthesquare.org/

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  carlinagency@gmail.com

 

 

 

 

Episode 128 | A year of major accomplishments - and how you can help the Foundation for Sarcoidosis Research

We are making progress against Sarcoidosis, whether it's new treatments or outreach to patients or even the FDA, the foundation for Sarcoidosis Research is making serious progress.  In this episode of the FSR Sarc Fighter Podcast,  Cathi Davis and Jennifer Bulandr join me to look back at all the advancements we have made in 2024 and they look ahead to what we can expect in 2025.  We will also talk about how FSR needs your support to continue to make these inroads, with its Gratitude and Giving campaign.  This is your chance to remember the organization that if fighting your cause as we reach the end of 2024!   

Merry Christmas and Happy Holidays! 

 

Show notes:

Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/

Holiday Pop-up Store: https://shop.printyourcause.com/campaigns/foundation-for-sarcoidosis-research-store/categories/crewnecks?accesstoken=fedd7e11-09bc-4960-9b41-68a91f851484

News Release from Kinevant: https://investor.roivant.com/news-releases/news-release-details/roivant-announces-topline-results-phase-2-resolve-lung-study

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  carlinagency@gmail.com

 

 

Episode 127 | Mariza Löb Talks about her life with Cardiac Sarcoidosis

Mariza Löb was minding her own business, cooking dinner for her family when suddenly something wasn't right.  In this episode of the FSR Sarc Fighter podcast, Mariza talks about how paramedics took her to the hospital and her journey with sarcoidosis began.

#sarcoidosis #sarcoidosis awareness #cardiacsarcoidosis @foundationforsarcoidosisresearch

Show notes

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

Mindfulness The Sound of Silence with Susan D'Agostino https://www.stopsarcoidosis.org/wellness-webinar-series/

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  carlinagency@gmail.com

Episode 126 | When is Cardiac Sarcoisosis at its worst and FMLA clearance for clinical trials

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  carlinagency@gmail.com