Sarc Fighter: Living with Sarcoidosis and other rare diseases

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.youtube.com/watch?v=dwXGeOoXOJU]   https://www.facebook.com/p/Roll-Call-Wheelchair-Dance-LI-100057573214676/ [https://www.facebook.com/p/Roll-Call-Wheelchair-Dance-LI-100057573214676/]   https://www.newsday.com/.../new-york-emmys-2024-img8jzdl [https://www.newsday.com/preview/video/new-york-emmys-2024-img8jzdl?fbclid=IwZXh0bgNhZW0CMTAAYnJpZBExaU8yTzJXdVdQTkdNU3ppZgEeBz-neJooygFm6ldGTTW5mn7MAxnOz3KsXTFgqbGNPDgUv48dKGOxwhjoACA_aem_PIwYECsczkZeqs6RxfN3nA]   https://www.facebook.com/photo?fbid=832500922012341&set=a.526379722624464 [https://www.facebook.com/photo?fbid=832500922012341&set=a.526379722624464]   https://www.facebook.com/cathleen.terrano/ [https://www.facebook.com/cathleen.terrano/]     MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/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 [https://stopsarcoidosis.rallybound.org/MarkSteier] The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ [https://www.stopsarcoidosis.org/] Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E [https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E] My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ [https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/] email me  carlinagency@gmail.com [carlinagency@gmail.com] #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/ [https://www.stopsarcoidosis.org/patient-registry/]   MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/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 [https://stopsarcoidosis.rallybound.org/MarkSteier] The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ [https://www.stopsarcoidosis.org/] Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E [https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E] My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ [https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/] email me  carlinagency@gmail.com [carlinagency@gmail.com] #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/ [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/ [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/ [https://sarcoidosisnews.com/news/acthar-gel-selfject-convenient-easy-use-patient-survey/] Help Royce help you:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc [https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc] MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/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 [https://stopsarcoidosis.rallybound.org/MarkSteier] The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ [https://www.stopsarcoidosis.org/] Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E [https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E] My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ [https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/] email me  carlinagency@gmail.com [carlinagency@gmail.com] #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/ [https://www.stopsarcoidosis.org/sarcoidosis-summit/] Help Royce help you:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc [https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc] More on brepocitinib: https://sarcoidosisnews.com/news/brepocitinib-phase-2-trial-doses-first-cutaneous-sarcoidosis-patients/ [https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form] 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/ [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 [https://stopsarcoidosis.rallybound.org/MarkSteier] The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ [https://www.stopsarcoidosis.org/] Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E [https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E] My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ [https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/] email me  carlinagency@gmail.com [carlinagency@gmail.com] #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/ [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 [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/ [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 [https://stopsarcoidosis.rallybound.org/MarkSteier] The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ [https://www.stopsarcoidosis.org/] Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E [https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E] My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ [https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/] email me  carlinagency@gmail.com [carlinagency@gmail.com] #sarcoidosis #sarcoidosisawareness