Sarc Fighter: Living with Sarcoidosis and other rare diseases

Mindy Buchanan is the Patient Engagement Manager for the Foundation for Sarcoidosis Research.  In this episode, she talks about the success of the September virtual summit and how you can participate in the upcoming sarc summit in November. 

As you may know, in a typical year, Sarcoidosis Warriors (Sarc Fighters!) have the chance to travel to cities across the United States to attend meetings, listen to speakers and meet one another -- All in an effort to become more familiar with the Sarc struggle.  This year, thanks to COVID-19, the summits have become virtual.  FSR has worked so hard, to make it so that we can all continue our respective battles with the most support possible!

More info on the November Summit and how to sign up:  https://www.stopsarcoidosis.org/patient-summits/

Meet Mindy!  https://www.stopsarcoidosis.org/about/staff/

Sarc and Pregnancy, a new study.  https://sarcoidosisnews.com/2020/09/10/sarcoidosis-linked-higher-risk-some-pregnancy-complications-swedish-study-shows/

Sarc Merch from FSR https://www.stopsarcoidosis.org/fsr-sarc-store/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

aTyr Pharma is working on a drug that could be the answer for many Sarc Fighters -- especially that large percentage fighting pulmonary sarc - or sarcoidosis of the lungs.  aTyr CEO Sanjay Shukla joins me for this podcast to talk about how the drug interacts with a patient's body to prevent sarc from damaging the tissues and causing the damage we are so familiar with.  

The drug, called aTyr1923 is in the second stage of clinical trials.  It has shown great promise in mice, but the results in humans are still undetermined.  Why is aTyr willing to take on such an expensive and risky undertaking?  How do you try to cure a disease that has no known cause?  And why focus all your efforts on a relatively small number of potential patients?  I asked Sanjay all those questions, and he had some enlightening answers!

More about aTyr https://www.atyrpharma.com/about-life/overview/

Clinical Trials with Atyr1923 https://www.atyrpharma.com/patients/clinical-trials/

Sanjay Shukla Bio https://www.atyrpharma.com/sanjay-s-shukla-m-d-m-s/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Mary Morlino was living a good life.  Skiing in Europe.  Tennis.  She was an aerobics instructor.  Then one day she became very sick and it would be years before doctors could diagnose the culprit.  Sarc.   In Episode 16 Mary shares her story about how she has bounced back and is taking the fight to Sarcoidosis and other rare diseases by working for the #EveryLife Foundation. 

Listen in as Mary takes you step-by-step through her battle with sarc -- including the time she suffered cardiac arrest in her kitchen!

You will want to learn more about the EveryLife Foundation, so here are some links.

• Main Website - https://everylifefoundation.org/

If you want to participate in the survey to see how sarcoidosis patients are fairing with COVI-19.  Click here: https://www.research.net/r/FSRSARC

Do you like "Zombie" the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on YouTube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Reginald Alexander knew there was something terribly wrong with his heart.  But neither he nor his doctors could figure out what it was.  Meanwhile, things got worse and worse.  Eventually he passed out in a public place and might have died, had he not fallen next to a doctor and a nurse!  Eventually they learned that it was sarc -- and that Reg would need a new heart.  In Episode 15 Reg recounts the story of the slow decline of his condition until suddenly it was almost too late.

Follow his challenge here on his Facebook Group.  https://www.facebook.com/groups/RegHealthJourney/about

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Barbara Mouradian and her husband Dan are amazing people.  She is fighting sarc in her lungs and her heart, while Dan is raising money by riding his bike thousands of miles.   They have a family and busy lives, yet Sarc rears its head several times a year to interrupt their plans.  In fact, Barbara never knows when she will have a good day, or when she will need to just stay in bed.  Despite it all, they are upbeat and energetic!  As to the part about the sharks -- Well, you'll just have to listen.  :)

Here are some links to Dan's fundraising efforts.  Please consider helping him to help the cause!

https://www.instagram.com/5000miles.us/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Angela Frelander is the person between you and a cure.  Ok -- I won't put it all on her shoulders, but without her, The Foundation for Sarcoidosis Research and all the people working to make our lives better would not have the resources they need to keep going. Angela is the Director of Development for the Foundation.  It is her job to raise money in order to keep everything going. COVID-19 has made everything that much more difficult.  In this podcast, Angela talks about the challenges and how you can help.

Make a donation to the Foundation for Sarcoidosis Research  https://www.stopsarcoidosis.org/donate/

Other ways to give to FSR https://www.stopsarcoidosis.org/ways-to-give/

Many Thanks to Mark Steier and The White Hot Lizards for allowing their song, Zombie to be the official music of the Sarc Fighter Podcast!  Mark is a fellow sarc fighter and you can hear his story in Episode 12 of the Sarc Fighter Podcast!

Here is the YouTube channel for the White Hot Lizards  https://www.youtube.com/channel/UCmmkG9P6IaIQ8gGuLvM0G-A

Want a healthier diet Read this post by Charleton Harris https://sarcoidosisnews.com/2020/07/17/healthy-diet-lifestyle-treatment-control-inflammation/

And this by Athena Merritt https://sarcoidosisnews.com/2020/07/07/vegetarian-diet-pain-relief-reduce-inflammation/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Mark Steier is a talented musician.  His battle with sarcoidosis has dominated his life to the point he wrote and performed a song, called Zombie to describe the battle. 

One stanza goes as follows: "Learn to suffer You’ll feel pain someday And learn endurance - Your strength will fade away

Dead man walking Trying to keep up the pace

Dead man walking

Counting down the days."

I can tell you that Mark's haunting melody is catchy -- but more than that it resonated with me -- as I'm sure it will with you.  In this episode of the Sarc Fighter Podcast, Mark describes his fight with sarc and describes the feelings and emotions that led him to the lyrics.  We will listen to the song in pieces, and then at the end -- in its entirety. 

More than that, Mark is donating the proceeds from Zombie to the Foundation for Sarcoidosis Research. 

If you would like to donate in honor of his efforts, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent to the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

May I suggest that you make a donation and also share the links above on your social media? The more people who know about Sarcoidosis, the easier it will be to raise funds to fight the disease.  Zombie takes our message and puts it in easily consumable terms anyone can understand and relate to.

I've talked to so many people already, and I feel like some portion of each person's story is represented in this song.  For some reason, I just think this song is important. 

Meanwhile, if you would like to contact me all of my info is below.

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Andrea Wilson knew she had a problem -- but doctors couldn't figure out what it was.   Eventually, they discovered it was sarcoidosis.  Despite living in a major city with great healthcare and the insurance to pay for it, Andrea struggled.  Eventually, she and her husband, Reading took action - founding the Foundation for Sarcoidosis research. 

Listen as they tell the story of growing from a fledgling concept at their kitchen table, to a multi-million dollar foundation that drives research and patient outreach around the world. 

It is a true honor to have Andrea and Reading as guests on the Sarc Fighter podcast.

Here is some quick background on the founding of FSR  https://www.stopsarcoidosis.org/about/

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Kerry Wong of Westchester, New York has an all too familiar story.  Years and years of misdiagnosis followed by the ultimate discovery of sarcoidosis.  When it was finally diagnosed, it gave her some answers but not much relief.  

Note: Kerry had many great fundraisers planned for 2020 that were canceled because of the Coronavirus pandemic -- including a day at Yankee Stadium -- although we discussed that in the interview, I deleted that portion as it was no longer relevant. 

Kerry's KISS and Westchester Support Group: https://www.stopsarcoidosis.org/support-group/kiss-westchester-support-group/

Kerry's article with the U.S. pain Foundation  https://uspainfoundation.org/blog/pain-awareness-month-always-aware-of-my-chronic-pain/

Kerry's Support Group in Westchester (may not be meeting until COVID-19 pandemic is over) https://www.burke.org/media/news/2019/11/sarcoidosis-support-group/1971

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  [email protected]

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Hello Sarc Fighters.   In this bonus podcast, we listen to the Sarcoidosis Associated Pulmonary Hypertension (SAPH) Guidelines Roundtable held on Monday, September 30, 2019, alongside the 2019 ERS Congress in Madrid, Spain.

Bayer is the original sponsor of the scientific and educational activities held during the event in Madrid.

It is presented in conjunction with the Foundation for Sarcoidosis Research and WASOG - the World Association for Sarcoidosis and Other Granulomatous Disorders.

Unlike most of the Sarc Fighter podcasts, this one is primarily for physicians. In particular, those working with patients who suffer severe cases of sarcoidosis in the lungs and how to determine if these advanced cases are driven by Sarcoidosis Associated Pulmonary Hypertension.

Panel members include:

• Robert Baughman, Internist at University of Cincinnati with specialties in Pulmonary Diseases, Lung Disease, Interstitial Lung Disease https://www.wasog.org/committee/Baughman