Fighting sarcoidosis as well as other rare diseases.

Episode 32 | April is Sarcoidosis Awareness month! Tricha Shivas tells us how to fight back!

April 5, 2021

April is the month we all re-double our efforts to let the world know we are here.  To tell the world that sarcoidosis exists, that it's a problem.  That it's a disease with no known cause or cure and that it messes with our lives in often unspeakable ways.  Defense number one for this disease is the Foundation for Sarcoidosis Research.  In April the Foundation is pulling out all the stops to shout it from the rooftops -- and you can help!  FSR VP for Research and Strategic Partnerships Tricha Shivas joins me on this episode of the Sarc Fighter Podcast to talk about the many, many events taking place in April to help spread awareness of Srcoidosis.

Don't Forget April is Sarcoidosis Awareness Month!  Here are some links to FSR activities!

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April’s Sarcoidosis Awareness Month Events

  1. April 1 – April 30: Steps for Sarc– To help celebrate April’s Sarcoidosis Awareness Month, FSR will be hosting our first virtual step and fundraising challenge! We want to complete 9 million steps or 4,500 miles to raise awareness for sarcoidosis worldwide and raise $25,000 for crucial sarcoidosis research initiatives and patient support programs.
  2. April 13thWorld Sarcoidosis Day - It’s World Sarcoidosis Day and we’re headed out on the town! Well, the virtual town! Join FSR staff and Patient Advocates as we host a celebration and networking event full of trivia, stories, and much more!
  3. April 17th, FSR SarcSocial, Fostering Growth and Resilience– The FSR SarcSocials are a patient-lead networking opportunity for the sarcoidosis community to create networks of support with FSR’s members from all over the world. Life with sarcoidosis is full of setbacks. It’s full of renegotiating what you can and can’t do anymore. And having a mindset focused on growth can change everything. Join FSR Patient Advocate, Trina Massey-Davis, as she shares her story of how shifting her mindset can have a ripple effect on life with a chronic disease.
    April 
  4. April 17thLet’s Eat! Cooking & Nutrition Class - Food is fuel for the body and soul. FSR will be hosting our first ever nutrition education and cooking class! We’ll learn together and cook together! Our friendly recipes will be sent out to registered attendees ahead of time so we can all make our tasty treats at the same time
  5. April 26thMemorial Monday Candlelight Vigil - FSR will be hosting our first virtual Memorial Monday Candlelight Vigil to honor and remember those we lost to sarcoidosis. To celebrate the event FSR has partnered with candle company, Scents of Adventure, to help us Celebrate Life. Scents of Adventure made a custom candle for the event and will donate a portion of the candle proceeds back to FSR.
  6. Date – TBD Ask the Experts on Inspire– Every year, FSR hosts a week-long online educational opportunity for patients to have their questions answered by a leading sarcoidosis expert in the field. Each day the experts will be answering questions on a different topic lead by the multidisciplinary team from FSR-WASOG Center of Excellence, National Jewish Health.
  7. April 27 at 12pm FSR Town Hall- Steroids and Sarcoidosis. FSR will be hosting a town hall to discuss the impact of steroids on patients and the need for more steroid sparing agents.  This town hall will be moderated by John Carlin, FSR Patient Advocate, and include a patient speaker, physician speaker and industry representative.  Please keep an eye on the events calendar for updates on the time and date for this event.
 
FSR Upcoming Events for 2021 https://www.stopsarcoidosis.org/events
 

More on aTyr Pharma: https://www.atyrpharma.com/

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/

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/

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

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