Sarc Fighter: Living with Sarcoidosis and other rare diseases

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 in as we learn more about one of the most p...

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-efzofitimod-pulmonary-sarcoidosis-treatment-tr...

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 subscribers.  Add to that a big presence on Tik Tok, Ins...

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: https://kinevant.com/ Namilumab: https://kin...

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 drug is in clinical trials.  He will discuss how m...

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 sarc fighter Mathew Hall, who is an Ironman tria...

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 needs to be recognized as a big problem for the medi...

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 fundraiser for sarcoidosis, and the Foundation for Sarcoi...

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 looking for ways to help others.  He also discusse...

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 is presented by aTyr Pharma.   Show Notes  ...

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 height of the pandemic -- which just made matte...

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 life differently.  Listen in as he shares the sto...

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 helps us reduce stress because our brains are n...

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.  Note: I am re-uploading this podcast after dis...

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.     Show Notes: More on aTyr Pharma: https://at...

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: https://www.stopsarcoidosis.org/gsca-leaders/...

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 mindset and understanding, that John shares with li...

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 that perspective, and experience as a Navy Hospit...

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 appear promising, but it may one day open doors t...

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 for Sarcoidosis Research to the list.  Joel i...

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 information on how to sign up for the clinical trial:...

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-and-sarcoidosis-surprising-new-research-from-the-u...

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 for information on how to sign up for the clinic...

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 legally.  It's a daily battle as the migrants cross...

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 the cause and treatment of Sarcoidosis.  In addit...