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

40:49

Episode 91| Promise from a new drug - and diagnosing...

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

2023/07/03

In Episode 91 of the FSR Sarc Fighter podcast, John shares two reports about developments in the treatment of sarcoidosis. He looks at recent studies published in Sarcoidosis News that show promise for aTyr Pharma's efzofitimod, currently in clinical trials, and also a report from Sweden that shows the difficulty in diagnosing neurosarcoidosis without an invasive and dangerous biopsy. Show notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial:

01:11:59

Episode 90 | Mathew Campbell ’s Sarc went from his...

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

2023/06/19

Matthew Campbell was trying to come back from a couple years of being out of shape, but his body seemed off somehow. His normal pep on the basketball court just wasn't there. What WAS there was sarcoidosis. Listen in as Matthew shares the story of how he gradually realized he was fighting way more than his fitness. Show notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq Back episodes from folks at the gala: Erica Courtenay Mann:

01:13:22

Episode 89 | What does your DNA have to do with...

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

2023/06/05

We don't know what causes Sarcoidosis, but we are getting closer and closer. A part of that research is coming from genetic experts at 23andMe. The genetics company has worked with thousands of people to study their DNA -- and to drill down to see if there is a connection between our genes and whether we get Sarcoidosis. Their findings were presented at an FSR Townhall forum hosted by Sarc Fighter Podcast Host John Carlin. The panelists include: C. Ann Scott- Woman of Color Patient Advisory

46:31

Episode 88 | MaryKay Reidenbach has been fighting the...

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

2023/05/22

Sarc Fighter MaryKay Reidenbach has been fighting sarcoidosis for close to three decades. It's invaded so many parts of her body, it's hard to figure out where it's the worst. But she keeps plugging along, trying to live her best life, and largely doing so. Hear her story in this episode of the FSR Sarc Fighter Podcast. www.kinevant.com www.sarcoidosistrial.com Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6 ClinicalTrials.gov listing for RESOLVE-Lung:

54:30

Episode 87 | Writer Rebeccca Stanfel on the Pain from...

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

2023/05/08

Rebecca Stanfel is a Sarc Fighter who also happens to be a wonderful writer -- to the point that national publications share her work. She recently published a blog in the Huffington Post, where she talked about the pain from Sarcoidosis that was so bad, only opioids would give her relief. In a world where we now often shudder at the mention of these addictive drugs, Stanfel wrote that they were her only path forward and that they serve a necessary purpose in certain situations -- including

01:20:39

Episode 86 | Betsy Bennett beat breast cancer - but...

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

2023/04/24

Betsy Bennett is fighting Sarcoidosis. That might seem easy after breast cancer led to a double mastectomy. But now the fatigue and ongoing battle with Sarc are taking a big toll on her quality of life. Listen in as she shares the story of how she thought she was disease free for just a brief time. Show Notes www.kinevant.com www.sarcoidosistrial.com Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6 ClinicalTrials.gov listing for RESOLVE-Lung:

01:23:45

Episode 85 | An FSR Town Hall - Getting closer to the...

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

2023/04/10

This podcast is a recording of the amazing town hall discussion looking at aTyr Pharma's drug that shows great promise as a replacement for prednisone for pulmonary sarcoidosis patients. In this discussion, we will hear from aTyr CEO Dr. Sanjay Shukla, FSR CEO Mary McGowan, Patient Jim Kuhn, and Dr. Shambhu Aryal - the Medical Director of the Inova Sarcoidosis Center. Together we look at the problems with the current therapies available to the sarcoidosis community, the frustration felt by both

55:48

Episode 84 | A patient story to go along with...

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

2023/04/03

April is Sarcoidosis Awareness month and FSR has many ways that the community can participate -- with your photos, videos and even holding up signs. It's all part of making the world aware that Sarcoidosis is a problem -- and remember the squeaky wheel gets the grease. Well it's time to squeak! Joining me on the FSR Sarc Fighter podcast this week are FSR Director of Development Angela O'Malley, Senior communications and Marketing Director Cathi Davis, and FSR Board Member and sarc patient Craig

46:13

Episode 83 | Tony Haskel thought his heart was...

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

2023/03/27

Tony Haskel is an active person. From his home in Connecticut, he makes time to ski in Vermont and ride his bike in the hilly regions around his home. But one day he found he couldn't go. His heart wasn't functioning properly because sarcoidosis had found its way into his body and started blocking vital communications within his heart itself. In this episode of the Sarc Fighter Podcast, Tony shares how sarcoidosis has attacked him and how he is fighting back. Show notes: More on aTyr Pharma:

58:25

Episode 82 | Sam Wassel’s unexplained abdominal pain...

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

2023/03/13

Sam Wassel is a young wife and mother. She is also a long distance runner. But the hardest thing she's encountered recently is the pain in her abdomen. At first she thought it was a severe issue with her monthly cycle. But upon further review, it was sarcoidosis. Listen as she details the pain she experienced and the difficult path to diagnosis. Also in this episode, Sarc Fighter Royce Robertson returns with details about his sarc fundraiser Cycle4Sarc. He's undertaking a major bike ride --

01:13:24

Bonus Episode | FSR Town Hall - Uncovering the Future...

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

2023/03/06

This is a special bonus episode of the FSR Sarc Fighter podcast. You will be listening to a town hall recorded on February 18, 2023, where the guests discuss how to get more people involved in clinical trials for medications pointed at treating sarcoidosis patients. Guests include Mary McGowan CEO of the Foundation for Sarcoidosis Research, Dr. Divya Patel Director of Sarcoidosis and ILD programs at the University of Florida, Bill Gerhart, CEO of Kinevant Sciences inc., And Garrie Farrow FSR

52:49

Episode 81 | Wade Tomlinson tries to walk away from...

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

2023/02/20

Wade Tomlinson is a relatively young 49 years old - and he's already been suffering from sarcoidosis for nine years. Despite his reduced ability to breathe, he hits the trails every day, where he tried to log 15,000 steps. Sometimes even more. In Episode 81 he tells john how sarcoidosis crept up on him, somewhat disguised as allergies. Show Notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq aTyr News Release:

31:08

Episode 80 | John riffs on sarcoidosis clinical trial...

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

2023/02/06

In Episode 80 of the Sarc Fighter podcast, we take it too sarcoidosis in two ways -- by learning how to join an important clinical trial and by living the fullest life we can despite the challenges sarcoidosis presents. Show Notes Kinevant Clinical Trial https://bit.ly/3DaVsR6 More about Kinevant: https://kinevant.com/about-us/ Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become s community outreach leader:

01:18:49

Episode 79a | Royce Robertson is Fighting Sarcoidosis...

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

2023/01/23

Royce Robertson is battling sarcoidosis, and he has a plan to do a cool, two-wheeled fundraiser. Royce has been dealing with sarcoidosis for years. In fact he was one of the first people I ever "met" who also had sarc. He reached out to me after I published a blog abut trying to ride my bike, while medications like Cytoxan and prednisone made it all but impossible. In this episode he shares the details of his battle with sarc, and his plans to take it to the disease from the seat of his

01:18:49

Episode 79 | Sarc Fighter Royce Robertson bares his...

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

2023/01/16

Royce Robertson has been through the wringer with sarcoidosis. It's impacted his heart in ways that impact every other aspect of his life. And yet he is scheming for a way to help all of us fight the disease by doing something he loves -- even though sarcoidosis is trying to stand in the way. Show Notes: More on aTyr Pharma: https://atyrpharma.com/ Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq aTyr News Release:

54:59

Episode 78 | Dr. John Belperio at UCLA has done a...

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

2023/01/02

Dr. John Belperio has been looking at dozens of studies on sarcoidosis, drilling down and figuring out exactly where medical science is with respect to pulmonary sarc. How often is it fatal? What are the best treatments? What can we say about the way sarcoidosis attacks the body? He's published his review in JAMA, the Journal of the American Medical Association, and now shares his findings here on the FSR Sarc Fighter podcast! Show Notes Kinevant Clinical Trial https://bit.ly/3DaVsR6 More

41:53

Episode 77 | Covid Vaccines and Sarcoidosis:...

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

2022/12/19

Doctors Christian Ascoli and Christen Vagts have done some of the most in-depth research yet when in comes to Sarcoidosis and Covid-19 vaccines. Do they protect Sarc Fighters from the virus? It's a good question, since there is strong evidence to suggest that vaccines against some other diseases are only marginally effective or not effective at all in sarc patients. Doctors Ascoli and Vagts went beyond a study of outcomes, and took a look deep inside the body to see what happens when sarc

52:14

Episode 76 | Leeanne West is a scientist who...

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

2022/12/05

Leanne West felt a bump behind her ear. It was the beginning of her journey with Sarcoidosis that has lasted for over a decade and lingers to this day. In this episode of the FSR Sarc Fighter Podcast, Leeanne, who has an amazing career as a researcher at Georgia Tech, talks about how Sarcoidosis has spread throughout her body, and how she keeps it at bay as best she can. Show Notes Kinevant Clinical Trial https://bit.ly/3DaVsR6 More about Kinevant: https://kinevant.com/about-us/ The FSR ACTe

01:12:18

Episode 75 | FSR Leaders Dr. Louise Perkins and CEO...

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

2022/11/21

FSR Board chair Dr. Louise Perkins and CEO Mary McGowan say we are closer than ever to major breakthroughs in the treatment of Sarcoidosis. In Episode 75 of the FSR Sarc Fighter Podcast, they join me to talk about all the progress that is being made on may fronts -- and how we can all participate in keeping the momentum going. Show Notes: Kinevant Clinical Trial https://bit.ly/3DaVsR6 More about Kinevant: https://kinevant.com/about-us/ FSR Snowflake Stories:

01:04:28

Episode 74 | A Doctor and Two Sarc Fighters Urge...

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

2022/11/07

In Episode 74 of the Sarc Fighter Podcast we take a deep dive into the reality that Sarcoidosis in more prevalent in people of color, but they are less likely to participate in clinical trials. That's a problem for medical professionals who are trying to help solve the sarcoidosis riddle, to find more effective treatments and help more people. Why is that? Three guests join me today to talk about it. They share their thoughts and ideas about the reluctance of patients to participate often because

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Sarc Fighter: Living with Sarcoidosis and other rare diseases

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