Let's say you or a family member wants to participate in a clinical trial, but the boss doesn't want you to have the time off because of extra visits to the doctor's office. Under new rules spearheaded by the Foundation for Sarcoidosis Research, companies must now allow patients time away from the job without fear of losing their employment.  In this special edition of the FSR Sarc Fighter Podcast, FSR CEO Mary McGowan joins me, along with Emily Dickens, Chief of Staff, Head of Government Affairs, and Corporate

Show Notes

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 

In this episode of the FSR Sarc Fighter Podcast, it's time to think.  Borrowing some thoughts from a man who faced a possibly fatal brain condition, I look at how similar his case is to our own -- bearing in mind that he expresses his case so much better than most people can or could.  Also, Sarcoidosis News is out with a study showing that Black Women are more likely to develop kidney stones than other groups.  

Show Notes

Eric Markowitz's Essay: https://bigthinkmedia.substack.com/p/what-brain-surgery-taught-me-about

The Big Think https://substack.com/@bigthinkmedia 

Black Women and Kidney Stones https://sarcoidosisnews.com/news/sarcoidosis-increases-risk-kidney-stones-black-women-us/

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 

Scarlette Washlock was diagnosed with sarcoidosis when she was just 12 years old.  Her mother, Kelly McBride, had to raise her daughter with all the anguish and uncertainties that come with Sarcoidosis, compounded by Scarlett's youth and her desire to stay active at school.  Together they succeeded.  Scarlette had a good high school experience and joins me on the podcast from her new freshman digs at Ohio State University, where she hopes a pre-med path is the one she can take.  Listen in as Scarlette and her mom discuss their journey as they took on sarcoidosis.  

Show Notes

Scarlette's Essays:

https://www.stopsarcoidosis.org/diagnosed-at-12-sarcoidosis/

Pediatric Sarcoidosis: How My Skin Was Affected 12-18 Years Old - Future of Personal Health

Sarcoidosis News Story on Ocular Sarc:  https://sarcoidosisnews.com/news/tailored-progressive-treatment-urged-ocular-sarcoidosis-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  [email protected]

#sarcoidosis #sarcoidosisawareness 

Cathleen Terrano has sarcoidosis.  It's in her kidneys.  In her heart.  In her lungs.  On her spinal cord.  Other places too.  And yet she has danced with some famous people and keeps on dancing and teaching dance to people who might otherwise miss out on life's precious moments -- like a father-daughter dance at a wedding.  Cathleen rocks bright purple hair so people will ask her about it -- and open a pathway to talk about sarcoidosis.  In this episode of the FSR Sarc fighter podcast hear Cathleen's story.

Also an update on FSR's recent awards to young researchers and a big think about how a simple pencil can be a model for us all!

Show Notes

Links to Cathleen's many activities:

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

On Episode 143 of the FSR Sarc Fighter Podcast, I have two guests. Taylor Harwood, Senior Research Coordinator for FSR, joins me to explain the new and improved patient registry.  Even if you've already registered, there is a small step you need to take to ensure researchers can find and use your valuable information.  Also joining me is physical therapist Marion Paetznik, who will tell you why it's so important to get or stay moving if you have sarcoidosis.  

Show Notes

FSR Patient Registry 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

Dr. Courtney Montgomery wants to know what causes sarcoidosis.  She's convinced it's in your genes.  Working in the clinic at the Oklahoma Medical Research Foundation, she sees patients every week, while she studies the potential link between Sarcoidosis and a person's genetic code.  In this episode of the FSR Sarc Fighter Podcast, she goes over the reasons she believes that certain people are more likely than others to develop this rare disease.

Show Notes

More on Dr. Courtney Montgomery:  https://omrf.org/research-faculty/scientists/montgomery-courtney-gray/

More on the FSR/ATS grant to Dr. Mallozzi: https://www.stopsarcoidosis.org/fsr-and-ats-announce-dr-mark-mallozzi-as-the-new-partner-grant-awardee/

The Acthar Gel Injector Survey: https://sarcoidosisnews.com/news/acthar-gel-selfject-convenient-easy-use-patient-survey/

Help Royce help you:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

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

In this episode Royce Robertson joins me to talk about how he's raising money to make it easier for Sarcoidosis patients to travel to and from their appointments.  It can be expensive to travel great distances to the right doctor, as he knows first-hand.  Royce and I are also part of a panel discussion on exercise and sarcoidosis coming up at the FSR Summit on June 28.  I will also share some personal details about a bit of a difficult time I'm experiencing at a personal level.  #sarcoidosis #sarcoidosisawareness 

Show Notes

FSR Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/

Help Royce help you:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

More on brepocitinib: https://sarcoidosisnews.com/news/brepocitinib-phase-2-trial-doses-first-cutaneous-sarcoidosis-patients/

Methotrexate Study: https://sarcoidosisnews.com/news/methotrexate-effective-though-slower-treating-pulmonary-sarcoidosis/

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

If there is one place to meet other sarcoidosis patients and to get your questions answered, from insurance denials to sex after sarc, it's at the 2025 FSR Global Virtual Sarcoidosis Summit.  The Summit is happening on June 28th and 29th.  And the deadline to sign up is June 14.  Joining me on the show today are Elise Hoover, VP for Research at FSR, and Kristen Vargas, who is the Planning Lead for the event.  Together, they will tell you everything you need to know and what to expect at this year's event.

Show Notes

Sign up for the FSR Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/

Scholarship for the FSR Summit:  https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form

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

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  [email protected]

#sarcoidosis #sarcoidosisawareness

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  [email protected]

#sarcoidosis #sarcoidosisawareness