Sarc Fighter: Living with Sarcoidosis and other rare diseases

By John CarlinMedicine Health & Fitness Fitness

Sarc Fighter: Living with Sarcoidosis and other rare diseases episodes

April 06Episode 161 | April is Sarcoidosis Awareness Month so let's See Sarcoidosis!
April is Sarcoidosis Awareness month, and that's something to sing about. And walk about. And talk about. And so much more. In this podcast, I'll be speaking with Tricha Shivas, Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, and Kate Anistasia, Director of Global Patient Programs. They have a whole menu of options that will excite you when it comes to way to celebrate and participate in Sarcoidosis Awareness month -- including a brief sing-along with the Sarc Fighter theme song, Zombie. This is gonna be fun. So listen in and prepare to get moving to make people See Sarcoidosis.
Show notes
Go to the FSR home page for info on Sarcoidosis Awareness Month. https://www.stopsarcoidosis.org/
Die Laughing: www.dielaughing.org
Support Royce: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
How to take the Veterans survey:
Log in to your FSR-SARC Patient Registry account.
Go to your Dashboard or Surveys/Studies tab.
Look for the Military Veterans Survey and click “Start” to begin.
Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.
https://www.stopsarcoidosis.org/patient-registry/
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]
#sarcoidosis #sarcoidosisawareness #particulatematter
1 hr 8 min
March 23Episode 160 | Dan Keota is determined to beat Sarcoidosis or Die Laughing
Dan Keota lives outside Philadelphia. He needs a double lung transplant. It's serious. But Dan is one of those people who find comedy just about anywhere -- even in the darkest throws of his own condition. Listen as Dan tells the story of how he is turning to humor while he hopes a lung donor becomes available. Be sure to listen at the end to hear his first on-stage comedy routine!

Show Notes
Die Laughing: www.dielaughing.org
Support Royce: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
How to take the Veterans survey:
Log in to your FSR-SARC Patient Registry account.
Go to your Dashboard or Surveys/Studies tab.
Look for the Military Veterans Survey and click “Start” to begin.
Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.
https://www.stopsarcoidosis.org/patient-registry/
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]
#sarcoidosis #sarcoidosisawareness #particulatematter
58 min
March 09Episode 159 | With Sarcoidosis half the battle is just getting to the doctor
Once you receive a diagnosis of Sarcoidosis, you have an answer. But that raises more questions. What medications should I take? Will they work? Is it the right medication? What complications could I face? Do I have the right doctor, or is the right doctor not in my local area? In many cases sarcoidosis means you need to travel to get the care you need. Your local doctors may not have enough experience to deal with your case. That was the situation for Royce Robertson. He spent tens of thousands of dollars just getting to and from his care. That's before he paid for traditional medical expenses. In this episode of the FSR Sarc Fighter podcast, Royce talks about raising money to help people offset the cost of travel.
Show Notes
Support Royce: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
How to take the Veterans survey:
Log in to your FSR-SARC Patient Registry account.
Go to your Dashboard or Surveys/Studies tab.
Look for the Military Veterans Survey and click “Start” to begin.
Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.
https://www.stopsarcoidosis.org/patient-registry/
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]
#sarcoidosis #sarcoidosisawareness #particulatematter
52 min
February 23 Episode 158 | For Sarah Bishop it's an uphill battle with Sarcoidosis
Sarah Bishop has a little extra compared to the rest of us. Even though she endures daily struggles with Sarcoidosis she pushes herself to the limit. In this case the limit is an endurance event called The Goat, which takes place in her native New Zealand. Sarah turned her expedition into a fundraiser for the Foundation for Sarcoidosis Research, and it gained national notoriety and momentum. In this episode of the FSR Sarc Fighter podcast, Sarah describes the grueling training and how sarcoidosis makes everything just that much more difficult.

Show Notes

Sarah's Facebook Page https://www.facebook.com/groups/1171838998236662/posts/1171929584894270/
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]
#sarcoidosis #sarcoidosisawareness #particulatematter

1 hr 8 min
February 09 Episode 157 | The Foundation for Sarcoidosis Research rises to the top
The Foundation for Sarcoidosis Research (FSR) is gaining national traction in the fight against sarcoidosis—championing research funding, patient rights, and access to treatment. In this episode, we dive into how FSR is helping patients receive the care they deserve while empowering the research community to develop new sarcoidosis treatments, therapies, and clinical breakthroughs.
We also explore how the Foundation protects and advocates for patients who choose to participate in sarcoidosis clinical trials. From advocacy to innovation, learn how the Foundation for Sarcoidosis Research is shaping the future of sarcoidosis care.
Listen in as FSR CEO Mary McGowan shares the news of a big award for the Foundation.
Show Notes
Watch the Reveal Video for the Voice of the Patient Award:
https://22731230.hs-sites.com/rare-disease-week-rva?ecid=ACsprvuh4hPVM-EpuV6h1LCQIIVcgakGq3L3ldFCfwDvvoWpm8_lTO4p5cCXzrvQH09E0wNjpA6q&utm_campaign=2024 Rare Disease Week

Obituary Elaine Carlin: https://www.millerplonkafuneralhome.com/obituary/ElaineEPratt-Carlin

Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong!
https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/

If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link:
https://www.stopsarcoidosis.org/fsr-gsca-community-groups/

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]
#sarcoidosis #sarcoidosisawareness #particulatematter

43 min
January 26 Episode 156 | Janet Mockovciak has tried everything to get her sarcoidosis under control
Janet Mockovciak has been through the wringer. Her sarcoidosis has gone from bad to worse. She has tried all the medications that most patients have used, but they only seem to last for a brief period of time. Then they stop. In the meantime, the sarcoidosis spreads throughout her system. Despite that, she manages to walk two miles every day, and recently went skiing with an oxygen tank on her back! Listen as Janet describes all she has been through -- with the takeaway being that she is still working to have the life that she wants and deserves.
Show Notes

Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong!
https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/

If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link:
https://www.stopsarcoidosis.org/fsr-gsca-community-groups/

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]
#sarcoidosis #sarcoidosisawareness #particulatematter

1 hr 2 min
January 12 Episode 155 | Dr. Mark Mallozzi is researching a potential cause of Sarcoidosis
Dr. Mark Mallozzi at National Jewish Health in Denver is examining the airborne particles or "particulate matter" that may play a role in triggering sarcoidosis. In this episode of the FSR Sarc Fighter Podcast, Dr. Mallozzi details some of the things in the air that we have no idea we are breathing. He looks at the evidence from the dust at 9-11, to burn pits for veterans to smoke from wildfires -- places where cases of sarcoidosis tend to spike.
Show Notes
More on Dr. Mark Mallozzi: https://www.stopsarcoidosis.org/fsr-and-ats-announce-dr-mark-mallozzi-as-the-new-partner-grant-awardee/
Donate link
https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025/Donate

Voice of the Patient Report
https://www.stopsarcoidosis.org/wp-content/uploads/FSR_2025_VoiceOfPatient_Report_R05_Digital.pdf

FSR 10 Year Registry Report
https://www.stopsarcoidosis.org/registry-report

YouTube Video - Cycling in Belgium and and Netherlands: https://www.youtube.com/watch?v=ytJBORBx9Gs

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]
#sarcoidosis #sarcoidosisawareness #particulatematter

52 min
December 27, 2025 Episode 154 | 2025 Was a great year in the fight against Sarcoidosis
Here at the end of 2025, it's time to measure our progress in the fight against Sarcoidosis -- and the news is good. In this episode of the FSR Sarc Fighter Podcast, Tricha Shivas, the Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, joins me to talk about huge strides in research funding, building the support community, Veterans' support, and even progress with lawmakers in Washington, D.C. In short, this is a good time to be a sarc patient -- as more and more progress is being made and even more is coming in 2026.

Show Notes
Donate link
https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025/Donate

Voice of the Patient Report
https://www.stopsarcoidosis.org/wp-content/uploads/FSR_2025_VoiceOfPatient_Report_R05_Digital.pdf

FSR 10 Year Registry Report
https://www.stopsarcoidosis.org/registry-report

YouTube Video - Cycling in Belgium and and Netherlands: https://www.youtube.com/watch?v=ytJBORBx9Gs

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]
#sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification #metformin

56 min
December 18, 2025 Episode 153 | A possible connection between Pulmonary Sarcoidosis and Lung Cancer
A new study out of India shows a bit of crossover between sarcoidosis and lung cancer. In this episode of the FSR Sarc Fighter podcast, I'll take a look at the study and what it reveals — including a new drug, Metformin, previously used to treat Type 2 Diabetes, that may show promise based on the study's findings. For what it's worth, I'll also share the terrors of surgery for my ruptured Achilles.

Show Notes:
Donate to FSR: https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025
FSR Biomarker Summit: https://www.stopsarcoidosis.org/fsr-convenes-global-leaders-for-landmark-clinic-alliance-meeting-and-sarcoidosis-biomarker-summit/
Sarcoidosis News Study from India: https://sarcoidosisnews.com/news/new-genetic-clues-connect-sarcoidosis-lung-cancer-risk
More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/
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]
#sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification #metformin

32 min
December 01, 2025 Episode 152 Basim Karim is fighting sarcoidosis while being HIV positive
Basim Karim is a fighter. He's battled HIV for more than two decades, has had COVID five times, and now has Sarcoidosis in multiple parts of his body. Doctors face a special problem with him because he cannot allow his immune system to be too depressed, or he faces consequences even greater than sarcoidosis. Basim joins me to tell his story.

Show Notes
Basim's Reddit thread: https://www.reddit.com/r/NewToSarcoidosis/s/pmNebor2Ve
Sarcoidosis News Ohio State Study: https://sarcoidosisnews.com/news/sarcoidosis-get-referral-lungs-soon-diagnosis
Sarcoidosis News - Repurposing Drugs: https://sarcoidosisnews.com/news/repurposing-drugs-improves-survival-sarcoidosis-patients-study/
Dr. Thomas Leung: https://www.thomasleunglab.org/
Sarcoidosis News Article: https://sarcoidosisnews.com/news/sarcoidosis-often-chronic-disease-affects-multiple-organs
OP-ED by Dr. Ennis James in STAT: https://www.statnews.com/2025/09/24/clinical-trial-patient-fmla-foundation-sarcoidosis-research-job-security/
SHRM: https://www.shrm.org/
FSR News Release: https://www.stopsarcoidosis.org/coalition-to-transform-clinical-trial-engagement-launches-champions-for-change-pto-initiative/
More from FSR: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/
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]
#sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification

46 min