Beste Living Rare podcasts (2024)

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

13d ago31:29

31:29

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 …

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

28d ago42:59

42:59

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 ma…

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

1M ago1:02:37

1:02:37

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 …

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

2M ago1:01:32

1:01:32

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 int…

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

2M ago1:17:38

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 Fi…

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

3M ago1:09:19

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 throug…

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Episode 119 | Jessica Soules deals with Neurosarcoidosis 55:37

3M ago55:37

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…

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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

4M ago1:20:07

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…

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Episode 117 | Renwick Brutus tried to write his own insurance policy. But sarcoidosis intervened. 58:00

4M ago58:00

58:00

Renwick Brutus has an unusual name and a story to match. He discovered he had sarcoidosis long ago now he's working through the disease and its complications. Including the time doctors were ready to perform surgery on his brain only to... Well, I'll let Renwick finish the story. Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.or…

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Episode 116 | Xentria has a drug - XTMAB-16 that shows promise in fighting Sarcoidosis 1:09:47

5M ago1:09:47

1:09:47

XTMAB-16, a drug now in clinical trials has been developed by Xentria. In this episode of the FSR Sarc Fighter podcast, Noopur Singh, Vice President of marketing & Patient Affairs, and Tom Matthews, Vice President for Clinical Development join me to explain how XTMAB-16 works in the body as a "referee" to control our body's immune responses. Listen…

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Episode 115 | Sarc Fighter Andrea Maione has both sarcoidosis and long COVID. It's no party. 56:23

6M ago56:23

56:23

In Episode 115 of the Sarc Fighter Podcast, Andrea Maione fights to keep things going as she deals with the aftermath of the pandemic while dealing with the increasing onset of Sarcoidosis symptoms. Show Notes Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen…

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Episode 114 | Influencer Jonathan Carlin uses YouTube and other social media for an FSR Fundraiser 52:35

6M ago52:35

52:35

In Episode 114 of the FSR Sarc Fighter Podcast, a member of the Super Carlin Brothers shares how he is using his significant social media presence to raise money for the Foundation for Sarcoidosis Research. Yes, that's Carlin -- the same name as mine. In this case it's my oldest son Jonathan -- whose YouTube channel has more than 2-million subscrib…

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Episode 113 | Kinevant Sciences makes progress with its drug Namilumab 1:03:17

7M ago1:03:17

1:03:17

In Episode 113 of the FSR Sarc Fighter podcast, John is joined by Kinevant Sciences CEO Bill Gerhart and the Senior Director of Patient Advocacy Rayne Rodgers. The team at Kinevant is excited to share the news of the progress they are making with their drug, Namilumab as a potential new therapy for sarcoidosis patients. SHOW NOTES Kinevant Sciences…

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Episode 112 | aTyr is getting closer to a new drug to fight sarcoidosis. 52:21

7M ago52:21

52:21

Joining me today on the FSr Sarc Fighter Podcast is Sanjay Shukla, CEO of aTyr Pharma. Sanjay returns to the podcast with a promising update on Efzofitimod, the most promising candidate to become the first drug developed specifically to fight sarcoidosis. Sanjay joins the podcast from Brazil, just one of the countries around the world, where the dr…

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Episode 111 | Mathew Hall hits the wall with sarcoidosis. And it's Sarcoidosis Awareness Month! 1:03:20

7M ago1:03:20

1:03:20

Episode 111 is a special episode of the FSR Sarc Fighter podcast. It's sarcoidosis awareness month -- and the folks who are fighting for us at FSR want to get the word out. So Angela O'Malley and Cathi Davis join me for the show to talk about how they are working behind the scenes to get people to "Say Sarcoidosis." But also on the show is fellow s…

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Episode 110 | Walgreens is helping to fight Sarcoidosis 34:40

8M ago34:40

34:40

In this Episode of the Sarc Fighter podcast, we learn how Walgreens is making Sarcoidosis a priority for its customers. Not only is Walgreens doing a fundraiser for the Foundation for Sarcoidosis Research -- the chain is talking about the disease and spreading the word that sarcoidosis is out there, that patients need help, and that the disease nee…

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Episode 109 | Sarcoidosis has not been kind to Laura Runge-Gordon 1:33:09

8M ago1:33:09

1:33:09

In this episode of the FSr Sarc Fighter Podcast, Dr. Laura Runge-Gordon talks about how neurosarcoidosis crept into her life after years of misdiagnosis. She has seen every kind of complication you can imagine -- not to mention doing it all with a stressful job during the pandemic. Meanwhile, Royce Robertson returns with another ambitious fundraise…

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Episode 105 | Perry Montoya has traveled the world, but now he's on a new journey. 1:12:01

9M ago1:12:01

1:12:01

Perry Montoya is a travel writer and tour guide. He's led people through the holy sites around Jerusalem and understands the history of the Bible. Now he's learning to understand and cope with Sarcoidosis. Listen in as he details the demands of his disease including multiple organ involvement. Despite this setback, he remains optimistic and is look…

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Episode 107 | Mark Simbrowsky has a racing heart. Even when he's sitting still. 1:04:22

9M ago1:04:22

1:04:22

Mark Simbrowsky is a big-time runner. He runs marathons. But Sarcoidosis said, "Not so fast." Mark suffers from cardiac sarcoidosis. He went from being the fittest person in the room to a hospital bed, and nobody knew why. Now after a long journey, he is returning to his old form -- but it hasn't been easy. This episode of the Sarc Fighter Podcast …

1
Episode 106 | Rachelle DeMaria just wants to launch her life 1:02:16

9M ago1:02:16

1:02:16

Rachelle DeMaria lives in Colorado Springs, where the scenery is beautiful and as they say, life is worth living. Rachelle had just finished cosmetology school and was getting ready to open her business. Then one day something in her back didn't feel right. After exhaustive testing doctors diagnosed her with Sarcoidosis. Her diagnosis came at the h…

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Episode 104 | John Martin thought it was time to get his affairs in order. 51:21

10M ago51:21

51:21

In episode 104 of the FSR Sarc Fighter Podcast, John Martin talks about how a routine trip to the doctor stopped him in his tracks. As is often the case is was a sarcoidosis related misdiagnosis. The good news is that he does not have cancer as his doctor suspected. On the other hand, sarcoidosis has dealt him a few setbacks and he must now live li…

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Episode 103 | Closure. Why we need it and why sarcoidosis won’t give it to us. 59:29

11M ago59:29

59:29

Happy New Year from the Sarc Fighter Podcast. To start the year off, I have a look at a psychological concept called the Zeigarnic effect. Don't worry about the big name, it will all make sense when you listen. But it has to do with how your brain discards information it no longer needs to free up room to process other thoughts. By doing this, it h…

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Episode 102a | Sherron Fantauzzi Is fighting the good fight. 1:07:11

11M ago1:07:11

1:07:11

Sherron Fantauzzi knew something was wrong with her body. After months of aligning the clues, doctors discovered it was sarcoidosis. In Episode 102 of the FSR Sarc fighter podcast, Sherron brings her upbeat personality to the mic and talks about how she has balanced a job with the FAA, a local talk show, being a basketball referee, and sarcoidosis.…

1
Episode 102 | Sherron Fantauzzi Is fighting the good fight. 1:07:46

11M ago1:07:46

1:07:46

Sherron Fantauzzi knew something was wrong with her body. After months of aligning the clues, doctors discovered it was sarcoidosis. In Episode 102 of the FSR Sarc fighter podcast, Sherron brings her upbeat personality to the mic and talks about how she has balanced a job with the FAA, a local talk show, being a basketball referee, and sarcoidosis.…

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Episode 101 | Andy Lacher has sarcoidosis in his lungs and his heart. Put he’s pushing on. 48:43

12M ago48:43

48:43

Andy Lacher knew something wasn't right when his heart rate wasn't right on a bike ride with his wife. It was the beginning of a year of doctor's visits until the ultimate diagnosis of sarcoidosis. Show Notes: Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/ Become a community outreach leader: ht…

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Episode 100 | John Mockovciak is a caregiver and philospher when it comes to Sarcoidosis 1:10:45

1y ago1:10:45

1:10:45

John Mockovciak spends a lot of time helping his wife, Janet travel her sarcoidosis journey. And for a couple who hike and ski and seek the lifestyle they've always wanted, it can be a lot of work for both of them. Yet somehow they get down the mountains in the snow, and to the iconic places so many people want to visit. But it takes a certain mind…

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Episode 99 | How to meet NY Yankees great Bernie Williams, and FSR’s Manny Lozano on the power of the sarcoidosis community 1:10:46

1y ago1:10:46

1:10:46

In Episode 99 of the FSR Sarc Fighter podcast, we learn Yankees great Bernie Williams is using his remarkable talent as a musician to help people with Sarcoidosis. We also meet Manny Lozano who is in charge of building the sarcoidosis community through FSR. Manny spent more than 20 years in the Navy including some heavy duty tours. Now he brings th…

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Episode 98 | Dr. Nancy Lin is looking deep in our cells to find a way to diagnose Sarcoidosis 59:09

1y ago59:09

59:09

Dr. Nancy Lin at Johns Hopkins is working on a way to quickly diagnose Sarcoidosis - at last compared to the current ways it is being done. She is looking at our micro RNA to see if there is something different in sarcoidosis patients. Her research is being funded by a $150,000 grant from the Foundation for Sarcoidosis Research. Not only does it ap…

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Episode 97 | Joel Rosen is fighting sarcoidosis and fighting for you at the same time. 44:13

1y ago44:13

44:13

Attorney Joel Rosen woke up one day and he wasn't feeling well. He thought maybe it was a cold. But he just couldn't get to feeling better. That sent him through a series of tests that eventually led to a diagnosis of sarcoidosis. As an attorney, he had already generously loaned his talents to several non-profits. And now we can add the Foundation …

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Episode 96 | How effective is methotrexate? And Royce braves the miles and the weather for your cause! 38:34

1y ago38:34

38:34

In Episode 96 of the FSR Sarc Fighter Podcast, fellow Sarc Fighter Royce Robertson returns to talk about his epic adventure while raising money for the cause. Meanwhile a small study in Japan suggests methotrexate may not be the answer for some Cardiac Sarcoidosis patients. Show Notes www.kinevant.com www.sarcoidosistrial.com Click here for informa…

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Episode 95 | FSR awards Dr. Christen Vagts $150,000 for critical research, and John puts his sarcoidosis in perspective. 41:21

1y ago41:21

41:21

Show Notes More on aTyr Pharma: https://atyrpharma.com/ 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/ Episode 77 interview with Dr. Christen Vagts https://beatsarc.podbean.com/e/episode-77-covid-vaccines-…

1
Episode 94 | Tony Haskel returns to the podcast after a rough few months. And do pulmonary Sarc patients get a fair shake at transplant time? 55:23

1+ y ago55:23

55:23

Tony Haskel first appeared on the podcast in March of 2023 - about five months prior to this recording. At the time he knew he had sarcoidosis, but he didn't really know what was in store. Now, months later he is much better acquainted with sarc, but still has an optimistic outlook. Show Notes www.kinevant.com www.sarcoidosistrial.com Click here fo…

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Episode 93 | John tests his Sarcoidosis on assignemt on the U.S.- Mexico border with the National Guard. 43:37

1+ y ago43:37

43:37

In this episode of the FSR Sarc Fighter Podcast, I tested my health as I was embedded with the National Guard, patrolling the U.S. - Mexico border at Eagle Pass, Texas. Temperatures soared up to 103 degrees, as I worked to report on the battle between migrants wanting to cross into the United States, and authorities who want them to come through le…

1
Episode 92 | Researcher Dr. Stephen Tilley on where we got sarcoidosis 55:57

1+ y ago55:57

55:57

Dr. Stephen Tilley is an Associate Professor of Medicine at the University of North Carolina. He specializes in lung disease with a concentrated effort on sarcoidosis. He is researching new methods and tools to combat the disease, by looking at the response our bodies create to different pathogens -- which could lead to a greater understanding of t…

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The Importance of Diverse Representation in Clinical Trials 1:08:24

1+ y ago1:08:24

1:08:24

On this episode, I will be speaking with Erica Courtenay-Mann, an advocate for patients with Sarcoidosis. She gives talks regarding what it's like to live with chronic illnesses & she is involved in the Women of Color Committee and the ACTe Now! Patient Committee. She is a strong voice to raise awareness about the importance of clinical trials, esp…

1
Episode 91| Promise from a new drug - and diagnosing neurosarcoidosis is hard. 40:49

1+ y ago40:49

40:49

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 with…

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Episode 90 | Mathew Campbell ’s Sarc went from his lungs to his heart. And FSR Crystal Gala highlights 1:11:59

1+ y ago1:11:59

1:11:59

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: …

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Episode 89 | What does your DNA have to do with Sarcoidosis? An FSR Town Hall. 1:13:22

1+ y ago1:13:22

1:13:22

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 present…

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Episode 88 | MaryKay Reidenbach has been fighting the fight for 28 years. 46:31

1+ y ago46:31

46:31

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.sarcoid…

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Episode 87 | Writer Rebeccca Stanfel on the Pain from Sarcoidosis and Legitimate Need for Opioids. 54:30

1+ y ago54:30

54:30

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 the…

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Episode 86 | Betsy Bennett beat breast cancer - but Sarcoidosis arrived shortly after. 1:20:39

1+ y ago1:20:39

1:20:39

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.c…

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Episode 85 | An FSR Town Hall - Getting closer to the first ever drug designed to fight Sarcoidosis 1:23:45

1+ y ago1:23:45

1:23:45

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…

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Episode 84 | A patient story to go along with Sarcoidosis Awareness month and how FSR is leading the fight. 55:48

1+ y ago55:48

55:48

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 a…

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Episode 83 | Tony Haskel thought his heart was healthy. Then came Sarcoidosis. 46:13

1+ y ago46:13

46:13

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 th…

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Episode 82 | Sam Wassel’s unexplained abdominal pain was sarcoidosis - plus Cycle4Sarc goes public 58:25

1+ y ago58:25

58:25

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. Al…

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Bonus Episode | FSR Town Hall - Uncovering the Future of Sarcoidosis Treatment and Clinical Trials 1:13:24

1+ y ago1:13:24

1:13:24

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. Div…

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Episode 81 | Wade Tomlinson tries to walk away from sarcoidosis. 52:49

1+ y ago52:49

52:49

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: …

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Episode 80 | John riffs on sarcoidosis clinical trial opportunities and ... Disney 31:08

2y ago31:08

31:08

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…

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Episode 79a | Royce Robertson is Fighting Sarcoidosis from the seat of his bike! 1:18:49

2y ago1:18:49

1:18:49

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 al…

1
Episode 79 | Sarc Fighter Royce Robertson bares his sole while looking for a way to help fight Sarcoidosis 1:18:49

2y ago1:18:49

1:18:49

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/…

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