PODCAST

Sarc Fighter: Living with Sarcoidosis and other rare diseases

John Carlin

Fighting sarcoidosis as well as other rare diseases.

health & fitness medicine

All Episodes

59:44

Episode 73 | FSR is looking for a few good...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/10/24

The Foundation for Sarcoidosis Research is looking for people who want to help in the fight. In 2022 FSR announced the Global Sarcoidosis Clinic Alliance - a member program of clinics, hospitals, and individual providers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. These providers, such as the Cleveland Clinic, are among the top care centers for Sarcoidosis in the United States. FSR is looking for the right people to lead

49:04

Episode 72 | Sarc Fighter Regina Gordon shares her...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/10/19

In Episode 72 of the Sarc Fighter podcast, Regina Gordon, an FSR Advocate shares the story of how sarcoidosis has curtailed her life for decades. She bravely shares how the disease has spread from her lungs to her skin and lymph nodes and other parts of her body. But she is not willing to give up. She's improved her outlook and even earned two college degrees. Listen in to hear how she is getting it done! And be sure to listen at the end when she shares a poem she wrote about the

57:10

Episode 71 | Andrew Brandt is fighting back - for all...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/09/26

Andrew Brandt has been suffering from sarcoidosis for more than five years. Lungs. Nervous system. Skin. And yet, he runs every day. And by that, I mean EVERY day. No matter how bad he feels. He will reveal his impressive streak during the interview. In the meantime, he is using programs offered by his company -- and his leadership skills, to raise serious money for the Foundation for Sarcoidosis Research. In this episode of the FSR Sarc Fighter podcast, Andrew tells his story, and we will

01:07:57

Episode 70 | Laura Ward thought she had cancer... but...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/09/12

Sarc Fighter Laura Ward has been fighting sarcoidosis for three years. Her first inclination that something was wrong happened at Yankee stadium, when she had trouble walking up to her seat. Initial tests showed she had lymphoma. But upon further review, it was pulmonary sarcoidosis. That led to issues with prednisone and other life challenges that she shares in Episode 70 of the FSR Sarc Fighter podcast. Show Notes #Makeitvisible

01:04:05

Episode 69 | Kinevant Sciences is researching...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/08/29

Kinevant Sciences is researching a potential new drug for sarcoidosis - namilumab – which inhibits one of the key proteins believed responsible for granuloma formation and persistence in sarcoidosis. In Episode 69 of the FSR Sarc Fighter Podcast, Kinevant CEO Bill Gerhart and Director of Patient Advocacy, Rayne Rodgers discuss the status of namilumab, and how you as a sarcoidosis patient can participate in the Phase 2 clinical trial, RESOLVE-Lung. Show

32:03

Episode 68 | Profound thoughts from a dying man.

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/08/15

A retired businessman had everything, until doctors told him he had only weeks to live. It was cancer, not Sarcoidosis. But this man began posting profound thoughts on a forum. I have met him and talked about his success in business. I have an amazing amount of respect for what he's accomplished personally as well as professionally. So when I read his posts I saw pearls of wisdom that apply to those of us fighting sarcoidosis. I wanted to share some of those thoughts today on the podcast. Show

40:16

Episode 67 | Kristi Hedge begins her sarcoidosis...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/08/01

Sarcoidosis patient Kristi Hedge is just beginning her journey with Sarcoidosis. Listen in as she details how she started feeling poorly. After multiple doctor visits they discovered she had a serious case with Sarc involvement in multiple organs. Show Notes All about the Summit: https://www.stopsarcoidosis.org/summit-2022/ Contact Mindy: mindy@stopsarcoidosis.org How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/ Want to learn more about the clinical trial for

37:24

Episode 66 | Unveiling Possibilities - All about the...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/07/18

Every year the Foundation for Sarcoidosis Research presents a summit, where leading experts, patients and caregivers can gather to discuss what's going on with our illness. It's also a time to learn more about the latest research and to just be with others who get it. The summit is virtual this year, so you will join on line, but you still get to visit the Exhibit Hall, the plenary sessions, and have Q and A with doctors, researchers and the pharmaceutical companies which are now lining up with

53:43

Episode 65 | aTyr Pharma is getting closer to a...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/07/11

aTyr Pharma is launching a new clinical trial for a drug called Efzofitimod, which has thus far shown significant promise as a drug that reduces dependence on prednisone for pulmonary sarcoidosis patients. In addition, the drug has also produced positive results in helping patients improve their overall condition and quality of life. In this episode of the Sarc Fighter Podcast, aTyr CEO Dr. Sanjay Shukla joins me to talk about testing to date, and to announce what could be the final stretch of

48:03

Episode 64 | The Leadership Team at the Foundation...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/06/27

In Episode 64 of the Sarc Fighter podcast Mary McGowan, CEO of the Foundation for Sarcoidosis Research and Tricha Shivas, Chief Strategy Officer talk about an exciting new development that will make it easier to patients to find the right doctor, and for doctors to find the right methods to treat Sarcoidosis. Show notes The New FSR Initiative https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/ Learn about the clinical trial

36:30

Episode 63 | The birds and finding contentedness

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/06/06

When sarcoidosis invades your life and rearranges your priorities, it's hard to cope. Sometimes it's the little things. Sarcoidosis makes most of us slow down. For some of us almost to a crawl. But even while we are slogging along there are ways to be content with our lives. Here's my stab at it. Show notes Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk The FSR Summit:

01:05:42

Episode 62 | Garrie Farrow had troubles wearing her...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/05/23

Garrie Farrow has been fighting sarcoidosis for 15 years, and maybe longer. It has spread from her lungs to other parts of her body including her ears. Yet she is still working - and still fighting. In fact she spends a great deal of time helping other Sarcoidosis patients as well. In Episode 62 of the Sarc Fighter podcast, Garrie shares the story of how sarcoidosis started out in her lungs, how doctors may have mishandled the early diagnosis and how sarc has had a tragic impact on her

45:02

Episode 61 | Expectations and Happiness with Sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/05/09

Sarcoidosis patients have shared many stories with me here on the Sarc Fighter podcast. It got me thinking about expectations. What did we expect from our lives before sarcoidosis? What do we expect now? Do we ever expect to get our old lives back -- and how hard should we try to get there. Managing expectations can be tough and perhaps frustrating. But it can also be fulfilling. In Episode 61 of the Sarc Fighter Podcast, I dig in really listen to what some of my guests had to say and look at

01:06:56

Episode 60 | Jack Boepple’s cardiac sarcoidosis hit...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/04/25

Jack Boepple is a former Boston marathon runner. A dedicated Cyclist and a fisherman who disappears into the wilderness for a week every year with his canoe and camping supplies. But even all of that couldn't prevent sarcoidosis from attacking his heart. In Episode 60 of the Sarc Fighter podcast, Jack shares the story of how sarcoidosis knocked him back more than a few steps -- and how he never saw it coming -- even when he was in the hospital beating most of the tests. Jack Cardioversion

43:27

Episode 59 | Angelica wants to know how her...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/04/11

Angelica Gauptman's grandmother died from complications of sarcoidosis. Angelica is trying to figure out why. She believes it had something do with the combination of Vitamin D and Prednisone. To be clear there is no clinical evidence that proves a link. Angelica is a high school senior with more than your average get up and go. She has undertaken a survey of Sarc patients, and has gotten the attention of some top level researchers. Hear her story, and the heartbreaking way her grandmother

47:19

Episode 58 | Time to get ready for Sarcoidosis...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/03/28

April is Sarcoidosis Awareness Month! In this episode of the Sarc Fighter podcast, three leaders from the Foundation for Sarcoidosis Research join me to talk about how the Foundation is working to raise awareness and some money for the fight, and how YOU can participate! Whether it's taking some extra steps or posting to social media with special hashtags -- it's important to help all of us in the battle for better health care and medications to fight sarc! Remember these hashtags for April!

01:01:09

Episode 57 | Sarc Patient Robin Goble has lost her...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/03/14

Sarcoidosis patient Robin Goble once lived an active life that included cycling, hiking and hanging out with her friends while helping to raise two teenage sons. Then sarcoidosis showed up in her life. Now she is trying to get past the problems and looking for answers while helping other sarcoidosis patients cope with their problems. Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers

01:04:01

Episode 56 | Dr. Shu-Yi Liao wants to know how...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/02/28

Dr. Shu-Yi Liao is trying to answer the questions we all have about sarcoiodosis. How does it move within our bodies? And why do some people get it and others not? Beyond that, what can be done to stop or prevent the disease? Show Notes More about Dr. Shu-Yi Liao: https://www.nationaljewish.org/doctors-departments/providers/physicians/shu-yi-liao Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk Universal Barriers Podcast:

01:01:47

Episode 55 | Erica Courtenay-Mann Has Sarcoidosis on...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/02/14

Erica Courtenay-Mann was feeling tired all the time. Beyond tired. Fatigued and unmotivated, but nobody understood. It was the onset of sarcoidosis. After several attempts for treatment -- her doctor noticed her neck didn't look right. This is her story. Show Notes Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/ More on Universal Barriers

01:14:33

Bonus Episode | Universal Barriers in Dealing with a...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2022/02/07

In this Bonus Episode of the Sarc Fighter podcast, listen in to the special seminar hosted by The Foundation for Sarcoidosis Research as a physician and two sarc patients look at barriers to health care that cannot be overcome unless we all begin to recognize that they are real and won't go away on their own. The discussion is led by Sarc Fighter host John Carlin. Show Notes More on Universal Barriers

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Sarc Fighter: Living with Sarcoidosis and other rare diseases

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