Sarc Fighter: Living with Sarcoidosis and other rare diseases

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:...

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...

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 Figh...

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...

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 we...

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 sig...

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 pro...

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,...

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 s...

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 Rober...

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 program...

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.c...

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:  w...

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 th...

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: htt...

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...

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 wen...

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 Cl...

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...

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 abo...

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...

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 gett...

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 Sarco...

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 Figh...

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 part...