Episode 130 | New Year, New Life.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Player FM - Internet Radio Done Right

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เนื้อหาจัดทำโดย John Carlin เนื้อหาพอดแคสต์ทั้งหมด รวมถึงตอน กราฟิก และคำอธิบายพอดแคสต์ได้รับการอัปโหลดและจัดหาให้โดยตรงจาก John Carlin หรือพันธมิตรแพลตฟอร์มพอดแคสต์ของพวกเขา หากคุณเชื่อว่ามีบุคคลอื่นใช้งานที่มีลิขสิทธิ์ของคุณโดยไม่ได้รับอนุญาต คุณสามารถปฏิบัติตามขั้นตอนที่แสดงไว้ที่นี่ https://th.player.fm/legal

<div class="span index">1</div> <span><a class="" data-remote="true" data-type="html" href="/series/this-is-womans-work-with-nicole-kalil">This Is Woman's Work with Nicole Kalil</a></span>

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This Is Woman's Work with Nicole Kalil

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3 วันที่แล้ว3d ago

ยกเลิกการติดตาม

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Together, we're redefining what it means, looks and feels like, to be doing "woman's work" in the world today. With confidence and the occasional rant. From boardrooms to studios, kitchens to coding dens, we explore the multifaceted experiences of today's woman, confirming that the new definition of "woman's work" is whatever feels authentic, true, and right for you. We're shedding expectations, setting aside the "shoulds", giving our finger to the "supposed tos". We're torching the old playbook and writing our own rules. Who runs the world? You decide. Learn more at nicolekalil.com

ประมาณหนึ่งปีที่แล้ว 32:25

MP3•หน้าโฮมของตอน

It's early January and I'm starting a new job -- reflecting on both my early days and the days and years ahead -- while pondering what it all means with sarcoidosis lurking in the background.

Show notes:

Kerry Wong on The new Netflix show No Good Deed: https://sarcoidosisnews.com/columns/sarcoidosis-storyline-netflixs-no-good-deed-true-patients/

Kerry Wong appears on Episode 10: https://beatsarc.podbean.com/e/episode-10-kerry-wong-talks-about-how-sarc-stole-her-life/

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

Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/

Center in the Square in Roanoke: https://www.centerinthesquare.org/

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

Episode 130 | New Year, New Life.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

published ประมาณหนึ่งปีที่แล้ว

แบ่งปัน

MP3•หน้าโฮมของตอน

It's early January and I'm starting a new job -- reflecting on both my early days and the days and years ahead -- while pondering what it all means with sarcoidosis lurking in the background.

Show notes:

Kerry Wong on The new Netflix show No Good Deed: https://sarcoidosisnews.com/columns/sarcoidosis-storyline-netflixs-no-good-deed-true-patients/

Kerry Wong appears on Episode 10: https://beatsarc.podbean.com/e/episode-10-kerry-wong-talks-about-how-sarc-stole-her-life/

Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/

Center in the Square in Roanoke: https://www.centerinthesquare.org/

Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/

ทุกตอน

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Episode 132 | Dr. Arthur Yee on the history of sarcoidosis and a call out to rheumatologists everywhere 1:01:11

14 วันที่แล้ว1:01:11

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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 #…

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Episode 131| A well-designed and successfully conducted clinical trial with very clear negative results is the second-best outcome in drug development 57:06

ประมาณหนึ่งปีที่แล้ว57:06

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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…

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Episode 130 | New Year, New Life. 32:25

ประมาณหนึ่งปีที่แล้ว32:25

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It's early January and I'm starting a new job -- reflecting on both my early days and the days and years ahead -- while pondering what it all means with sarcoidosis lurking in the background. Show notes: Kerry Wong on The new Netflix show No Good Deed: https://sarcoidosisnews.com/columns/sarcoidosis-storyline-netflixs-no-good-deed-true-patients/ Kerry Wong appears on Episode 10: https://beatsarc.podbean.com/e/episode-10-kerry-wong-talks-about-how-sarc-stole-her-life/ 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 Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/ Center in the Square in Roanoke: https://www.centerinthesquare.org/ 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…

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Episode 129 | Karen Coleman is a dancer who had to slow her feet thanks to sarcoidosis 1:01:41

ประมาณหนึ่งปีที่แล้ว1:01:41

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Sarcoidosis snuck up on Karen Coleman. A dance instructor, she couldn't figure out why she wasn't keeping up in her jazzercize class. After plenty of time with doctors and more CAT Scans than she would like, she discovered she was suffering from pulmonary Sarcoidosis. 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 Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/ Holiday Pop-up Store: https://shop.printyourcause.com/campaigns/foundation-for-sarcoidosis-research-store/categories/crewnecks?accesstoken=fedd7e11-09bc-4960-9b41-68a91f851484 Center in the Square in Roanoke: https://www.centerinthesquare.org/ 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…

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Episode 128 | A year of major accomplishments - and how you can help the Foundation for Sarcoidosis Research 45:02

ประมาณหนึ่งปีที่แล้ว45:02

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We are making progress against Sarcoidosis, whether it's new treatments or outreach to patients or even the FDA, the foundation for Sarcoidosis Research is making serious progress. In this episode of the FSR Sarc Fighter Podcast, Cathi Davis and Jennifer Bulandr join me to look back at all the advancements we have made in 2024 and they look ahead to what we can expect in 2025. We will also talk about how FSR needs your support to continue to make these inroads, with its Gratitude and Giving campaign. This is your chance to remember the organization that if fighting your cause as we reach the end of 2024! Merry Christmas and Happy Holidays! Show notes: Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/ Holiday Pop-up Store: https://shop.printyourcause.com/campaigns/foundation-for-sarcoidosis-research-store/categories/crewnecks?accesstoken=fedd7e11-09bc-4960-9b41-68a91f851484 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…

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Episode 127 | Mariza Löb Talks about her life with Cardiac Sarcoidosis 58:12

ประมาณหนึ่งปีที่แล้ว58:12

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Mariza Löb was minding her own business, cooking dinner for her family when suddenly something wasn't right. In this episode of the FSR Sarc Fighter podcast, Mariza talks about how paramedics took her to the hospital and her journey with sarcoidosis began. #sarcoidosis #sarcoidosis awareness #cardiacsarcoidosis @foundationforsarcoidosisresearch Show notes Sarcoidosis news report on cardiac sarcoidosis: https://sarcoidosisnews.com/news/poorer-outcomes-seen-isolated-cardiac-sarcoidosis/ Mindfulness The Sound of Silence with Susan D'Agostino https://www.stopsarcoidosis.org/wellness-webinar-series/ Department of Labor and Clinical Trial participation: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ My story on the Trump Rally: https://www.wsls.com/news/local/2024/11/03/local-representatives-speak-at-trumps-rally-in-salem/ 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…

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Episode 126 | When is Cardiac Sarcoisosis at its worst and FMLA clearance for clinical trials 37:14

ประมาณหนึ่งปีที่แล้ว37:14

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In this episode of the FSR Sarc Fighter podcast I share a new study from Japan that compared people with systemic cardiac sarcoidosis -- those people who have cardiac sarc as well as other organ involvement -- with those who have only cardiac involvement. The research found that if you have it only in your heart it may actually be more serious. Also, FSR just released information that will give you a sigh of relief if you want to participate in a clinical trial. I also riff a bit about election night 2024, covering a Donald Trump rally, and a speech on the difficulty of sharing scientific data with the viewing public on TV news. Show notes Sarcoidosis news report on cardiac sarcoidosis: https://sarcoidosisnews.com/news/poorer-outcomes-seen-isolated-cardiac-sarcoidosis/ Department of Labor and Clinical Trial participation: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ My story on the Trump Rally: https://www.wsls.com/news/local/2024/11/03/local-representatives-speak-at-trumps-rally-in-salem/ 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…

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Episode 125 | All about our session with the FDA as the Sarc community makes its case. 31:29

ประมาณหนึ่งปีที่แล้ว31:29

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In Episode 125 of the FSR Sarc Fighter Podcast, a look into the great success of the Externally Led Patient Focused Drug Development Meeting with the FDA. John co-hosted the meeting with Mary McGowan, the CEO of the Foundation for Sarcoidosis Research as you - the sarcoidosis community joined in to share your stories with the FDA to let the policy and decision makers know what you are dealing with. How hard it is to live with this disease and how few medicines are available to treat it. The meeting happened Monday, October 28th in Washington, D.C.. In this episode of the podcast I'll give you a look behind the scenes as months of work came together in just a couple of days for a fantastic presentation to the FDA. #sarcoidosis Show notes Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark 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…

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Episode 124 | FSR CEO Mary McGowan on how we are taking the sarcoidosis message to the FDA 42:59

ประมาณหนึ่งปีที่แล้ว42:59

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On October 28th the Sarcoidosis world -- led by the Foundation for Sarcoidosis Research will have perhaps its best chance ever to tell the FDA what's going on with us. On that day, FSR is leading an event called an Externally Led Patient Focused Drug Development discussion . On that day from 10 am to 3 pm Patients, caregivers, medical experts and maybe you, will be telling the FDA what our lives are like. How insufficient current medications can be. And, how badly we deserve new treatments and yes even a cure for sarcoidosis. In this episode of the FSR Sarc Fighter Podcast, FSR CEO Mary McGowan joins me to talk about this session with the FDA, what it looks like, why it's important and how you can join in. Please give this podcast a listen -- and please sign up now to join in on October 28th. Show notes Join the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/events/fsr-externally-led-patient-focused-drug-development-meeting/ Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark 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…

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Episode 123 | Stephanie Mizell is helping you beat Sarcoidosis while she struggles with her own sarc symptoms 1:02:37

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Stephanie Mizell has good days and bad days. And she doesn't know what it will be until she wakes up and breathes. Such is the life of a young mother with sarcoidosis. Shortly after her diagnosis, Stephanie learned that FSR needed a person with her marketing talents. She applied for the job -- and now she is helping all of us by spreading the word about sarcoidosis with her professionalism and skills. Listen in as she tells how she learned of the job with the Foundation, and how she now uses all the tricks of the trade to make sure our social media presence is felt by as many people as possible. Show notes Join the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/events/fsr-externally-led-patient-focused-drug-development-meeting/ Sign up for FSR's 100-Mile Challenge: https://givp.nl/register/MGEluUUb Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark 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…

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Episode 122 | Lindsay Lawrence was a surfer until sarcoidosis pulled her under 1:01:32

ประมาณหนึ่งปีที่แล้ว1:01:32

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Lindsay Lawrence was the picture of health. Active, mother of two children, healthy eater. All the things. But something just wasn't right. It got worse and worse until her doctor told her that her lungs were being damaged by sarcoidosis. In the time since diagnosis, she has been searching for the medications that work, while sarcoidosis creeps into other parts of her body. In this episode of the FSR Sarc Fighter Podcast, Lindsay shares her story, including her terrible bout with prednisone. Lindsey -- with facial swelling from prednisone. Show Notes Sign up for FSR's 100-Mile Challenge: https://givp.nl/register/MGEluUUb Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark 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…

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Episode 121 | Wade Tomlinson needed a lung transplant 1:17:38

ประมาณหนึ่งปีที่แล้ว1:17:38

1:17:38

The combination of Sarcoidosis and Covid proved too much for Wade Tomlinson. His lungs were wracked with damage from sarcoidosis. So when he got covid it was the punch his body couldn't handle and he needed to take drastic action. Wade got on several waiting lists for a lung transplant and then waited for the call. In episode 121 of the FSr Sarc Fighter Podcast, Wade recounts the moment the call came in and the series of events that led to him becoming a recipient. Let's just say it wasn't clear-cut. Listen in as Wade tell his story and brings up to date on how he is feeling six months after his surgery. Also in this podcast -- FSR's Stephanie Mizell joins me for a quick explanation of the Foundation's most recent fundraiser! Show Notes: Sign up for FSR's 100-Mile Challenge: https://givp.nl/register/MGEluUUb Wade's Go Fund Me: https://www.gofundme.com/f/support-wade-allie-medical-life-expenses?attribution_id=sl:1bcda970-9100-46d6-884b-82c1a3ee4239&utm_campaign=man_sharesheet_dash&utm_medium=customer&utm_source=copy_link Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark 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…

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Episode 120 | Dr. Kamal Bharucha is a researcher who found himself a heartbeat away from real trouble 1:09:19

ประมาณหนึ่งปีที่แล้ว1:09:19

1:09:19

Dr. Kamal Bharucha is a Pediatrician-Scientist, Clinical Development Leader and Biotech Startup Advisor in the rare disease space. And suddenly he found himself dealing with a rare disease - sarcoidosis. He says he was feeling fine and went for a routine check-up and discovered everything was far from fine. Dr. Bharucha describes his journey through diagnosis and discovery as he fights back against the disease. But what does a researcher do when presented with something like this? They present a poster to colleagues urging them to consider pushing the use of heart rate monitors in more people -- so heart issues become apparent much sooner! Below is the poster he present to the American Thoracic Society entitled Multisystemic Sarcoidosis Culminating in Asymptomatic Complete Heart Block. SHOW NOTES Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Kamal's Papers on Sarcoidosis: https://link.springer.com/article/10.1007/s11606-021-07310-6 https://www.kevinmd.com/2023/08/heart-disease-in-the-shadows-a-closer-look-at-cardiac-sarcoidosis.html https://www.linkedin.com/in/kamal-bharucha/ Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ 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…

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Episode 119 | Jessica Soules deals with Neurosarcoidosis 55:37

ประมาณหนึ่งปีที่แล้ว55:37

55:37

When it comes to sarcoidosis, one of the rarest forms is neurosarcoidosis or sarcoidosis in the nervous system. That's what Jessica Soules is dealing with. A long-time fitness instructor, sarc has taken the bounce out of her step. In addition, Jessica is trying to spread the message of another rare disease that claimed the life of a friend. In this episode she talks about her own struggles with sarcoidosis and a little about her group called Jonnie's Goodguys -- named after her friend who suddenly dropped dead one day while at work. Show Notes: Jonnie's Goodguys: https://jonniesgoodguys.org/ Support Mark's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ MORE FROM JOHN: Biking 4 Boomers https://www.youtube.com/@biking4boomers 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…

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Episode 118 | Mark Steier -- Who wrote the Sarc Fighter theme song has an unpdate, and his wife Caeleigh goes long for FSR 1:20:07

ประมาณหนึ่งปีที่แล้ว1:20:07

1:20:07

Zombie is the theme song for the FSR Sarc Fighter podcast. If you listen, you know. Shortly after I launched the podcast Mark Steier e-mailed me to say he had sarcoidosis and had written and recorded a song about it. I didn't expect much. But the song blew me away, and Mark quickly agreed to allow me to use it as the theme song. You've been hearing it ever since. Meanwhile Mark's health has been up and down, sometimes seriously down. And -- his wife and caregiver Caeleigh, is now stepping up and running the New York City Marathon as an official FSR fundraiser. So she also joins me today. In addition, podcast "regular" Royce Robertson met me on a bicycling journey across New York State, where I interviewed him about his health and his own fundraising effort through cycle4sarc. It's a big Episode! Mark and Caeleigh! Riding with Royce! Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/ Support Mark's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/ 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…

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Sarc Fighter: Living with Sarcoidosis and other rare diseases « » Episode 130 | New Year, New Life.

Episode 130 | New Year, New Life.

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Sarc Fighter: Living with Sarcoidosis and other rare diseases « »
Episode 130 | New Year, New Life.