Fighting sarcoidosis as well as other rare diseases.
Episodes
Monday May 26, 2025
Monday May 26, 2025
In this Episode of the FSR Sarc Fighter Podcast Dr. Sotonye Imadojemu joins me to talk about sarcoidosis of the skin or cutaneous sarcoidosis. It's very common, but we don't always talk about it. sometimes it is it's own problem, and often it represents a hidden issue with sarcoidosis concerning additional organ involvement. Dr. I is an expert working in Boston at Brigham and Women's Hospital.
Show Notes
Sign up for the FSR Annual Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/
Scholarship for the FSR Annual Summit: https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form
More on Dr. Imadojemu: https://physiciandirectory.brighamandwomens.org/details/13366/sotonye-imadojemu-dermatology-boston-chestnut_hill
Kinderdijk: https://kinderdijk.com/
FSR brings the N95 Mask Game to people fighting the California wildfires: https://www.globenewswire.com/news-release/2025/04/02/3054169/0/en/Foundation-for-Sarcoidosis-Research-Joins-with-Walgreens-Cedars-Sinai-to-Provide-Foothill-Unity-with-Free-N95-Masks-to-Protect-Residence-Cleaning-Up-from-the-Recent-Los-Angeles-Wil.html
The study reported in Sarcoidosis News: https://sarcoidosisnews.com/news/28-gene-mutations-associated-sarcoidosis-risk-identified-study/
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
Thursday May 15, 2025
Thursday May 15, 2025
Katie Pantea has multi-organ involvement of sarcoidosis. But when it struck her nervous system, doctors struggled to diagnose her as she began to lose her memory of daily events. In this episode of the FSR Sarc Fighter Podcast, Katie talks about how she's been able to fight back and piece together events that initially she could not recall. It also helped that she is a nurse who lives near a sarcoidosis center that could give her the treatment she needed.
Show Notes
Sign up for the FSR Annual Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/
Scholarship for the FSR Annual Summit: https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form
FSR brings the N95 Mask Game to people fighting the California wildfires: https://www.globenewswire.com/news-release/2025/04/02/3054169/0/en/Foundation-for-Sarcoidosis-Research-Joins-with-Walgreens-Cedars-Sinai-to-Provide-Foothill-Unity-with-Free-N95-Masks-to-Protect-Residence-Cleaning-Up-from-the-Recent-Los-Angeles-Wil.html
The study reported in Sarcoidosis News: https://sarcoidosisnews.com/news/28-gene-mutations-associated-sarcoidosis-risk-identified-study/
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
Monday Apr 28, 2025
Monday Apr 28, 2025
In this Episode of the FSR Sarc Fighter podcast, Dr. Brandon Moss, Director of the Neuro Sarcoidosis Clinic at the Cleveland Clinic, talks about the unique challenges of neuro sarcoidosis. Dr. Moss also happens to be my doctor. I've told him he can use my situation as a case study for the sake of this discussion. So you may hear a lot about my spinal cord. Hey! It's all for the greater good. also in this episode, it's time to give to FSR. You can participate in a study by NORD -- dealing with rare diseases-- and the story of why FSR is involved with the cleanup after the California Wildfires in January.
SHOW NOTES
Participate in the Living Rare Study by NORD www.livingrarestudy.org.
Sign up for the FSR Annual Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/
Scholarship for the FSR Annual Summit: https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form
FSR brings the N95 Mask Game to people fighting the California wildfires: https://www.globenewswire.com/news-release/2025/04/02/3054169/0/en/Foundation-for-Sarcoidosis-Research-Joins-with-Walgreens-Cedars-Sinai-to-Provide-Foothill-Unity-with-Free-N95-Masks-to-Protect-Residence-Cleaning-Up-from-the-Recent-Los-Angeles-Wil.html
More About Dr. Brandon Moss: https://my.clevelandclinic.org/staff/23790-brandon-moss
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
Monday Apr 14, 2025
Monday Apr 14, 2025
Sarah Bishop is busier than most people. She is an ambitious runner, she is a police detective, and she loves the outdoors in New Zealand. But she started having trouble doing even normal things. She would get so tired and out of breath that her basic activity was nerly down to nothing. But nobody could figure out what was wrong with her. Sound familiar? It was sarcoidosis. Sarah heard the Sarc Fighter podcast and reached out saying she wanted to share her story in the hope that it would help other people.
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
Monday Apr 07, 2025
Monday Apr 07, 2025
Bonus Episode of the FSR Sarc Fighter podcast. In this bonus episode of the FSR Sarc Fighter podcast -- a reminder of the fantastic progress that has been made when it comes to making it possible for people to participate in clinical trials. Thanks to the tireless work of the team at the Foundation for Sarcoidosis Research and the support of Mallinckrodt Pharmaceuticals and Boehringer-Ingelheim, it is now much easier to say "Yes" if you want to participate. Thanks to their work, participation is now covered under FMLA - meaning you can take time off from work to go to the doctor or the clinic without fear of losing your job. This is a huge win for researchers and all of us in the rare disease community. Listen also as Sarc fighter Karen Colemen tells us how sarcoidosis has slowed her dancing.
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
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
Monday Mar 31, 2025
Monday Mar 31, 2025
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
Monday Mar 17, 2025
Monday Mar 17, 2025
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 #
Monday Mar 03, 2025
Monday Mar 03, 2025
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 #
Monday Feb 17, 2025
Monday Feb 17, 2025
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 #
Monday Jan 27, 2025
Monday Jan 27, 2025
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