Episodios

  • Episode 148 | FMLA Clarifiction Part 2 - A real life story of the perils of trying to stay in a clinical trial and how FSR achieved the FMLA Clarification
    Oct 6 2025

    It's not always easy to participate in a clinical trial. Even if you want to, how do you get the time off from work? Starting in 2025, thanks to the Foundation for Sarcoidosis Research, there is a provision called the FMLA Clarification, which essentially states that you can participate without fear of losing your job. In this episode of the FSR Sarc Fighter Podcast, Dr. Ennis James, a sarcoidosis researcher and physician at the Medical University of South Carolina, and Tricha Shivas, Chief of Staff and Strategy at FSR join me to talk about how difficult life can be for patients. Dr. James shares a real-life story about a woman who fought to stay in a trial after problems arose at work.

    SHOW NOTES

    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 carlinagency@gmail.com

    #sarcoidosis #sarcoidosisawareness #fmla #fmlaclarification

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    54 m
  • Episode 147 | The FMLA Clarification -- Part 1 Allowing patients to use FMLA to participate in clinical trials
    Sep 22 2025

    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 Secretary for Society for Human Resources Management. Together they will walk us through the new guidelines for HR departments when it comes to allowing employees to participate in clinical trials. @SHRM #SHRM #humanresources #clinicaltrial

    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 carlinagency@gmail.com

    #sarcoidosis #sarcoidosisawareness

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    1 h y 9 m
  • Episode 146 | A solid dose of perspective and are sarcoidosis patients more likely to get kidney stones?
    Sep 8 2025

    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 carlinagency@gmail.com

    #sarcoidosis #sarcoidosisawareness

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    30 m
  • Episode 145 | Scarlett is the youngest sarc patient yet
    Aug 25 2025

    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 carlinagency@gmail.com

    #sarcoidosis #sarcoidosisawareness

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    1 h y 6 m
  • Episode 144 | Cathleen Terrano dances on despite Sarcoidisis
    Aug 6 2025

    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:

    https://www.youtube.com/watch?v=dwXGeOoXOJU https://www.facebook.com/p/Roll-Call-Wheelchair-Dance-LI-100057573214676/ https://www.newsday.com/.../new-york-emmys-2024-img8jzdl https://www.facebook.com/photo?fbid=832500922012341&set=a.526379722624464 https://www.facebook.com/cathleen.terrano/

    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

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    1 h y 8 m
  • Episode 143 | Why Sarc patients MUST exercise and the New FSR Patient Registry explained
    Jul 21 2025

    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 carlinagency@gmail.com

    #sarcoidosis #sarcoidosisawareness

    Más Menos
    56 m
  • Episode 142 | Dr. Courtney Montgomery is looking for the cause of Sarcoidosis.
    Jul 7 2025

    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 carlinagency@gmail.com

    #sarcoidosis #sarcoidosisawareness

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    1 h y 4 m
  • Episode141| A tough patch for me and Royce Roberston rides for all of us.
    Jun 23 2025

    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 carlinagency@gmail.com

    #sarcoidosis #sarcoidosisawareness

    Más Menos
    39 m