FSHD Straight Talk: 2024 World FSHD Special!

It’s World FSHD Day!🍊 To celebrate today, Tim Hollenback, FSHD Straight Talk host, talks with: Ricardo Gerpe from FSHD Spain; Chelsea Moeller from the FSHD Society; Rick & Terry Colella from Friends of FSH Research; Jennifer Cherniwchan of the Alberta Chapter; Chris Carrino, announcer for the Brooklyn Nets and founder of the Chris Carrino Foundation for FSHD; and Priscilla Sharun, Co-Director of the British Columbia Chapter.
For more information about World FSHD, please visit www.fshdsociety.org/world-fsh...
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
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[@taylorvandiver8554]

Great stuff as usual Tim!

[@wjcorrinne4052]

Tim, Is FSHD really the most common type of MD? I’ve heard that it’s the second &/or third most common form? Some of the info has been 1 in 6-8K have it in the Netherlands and 1 in 10/11K here in the U.S. I usually miss your show because I’m generally in physical therapy for the better part of your program. I have FSHD and almost 2 years ago I began P/T with a therapist that only works with individuals with neurological issues. WHEN I first learned about her I had my neurologist write a script for working with this specific therapist. Since then I’ve had two hip replacements, one to replace a joint that was partially slipping out. In between my start to now it’s been either in relation to my hip issues &/or FSHD or both in conjunction with each other. This has helped me gradually work through those plateaus where in the past my body would rebel and therapist would tell me that we aren’t making progress and would stop the therapy. Medicare regulations were behind those decisions to stop. One of my therapy days was on a Wed for June so I’ve been able to watch. Otherwise I usually catch you on UA-cam.

[@jorgeuriellopezcaballero2223]

Sorry for my grammar and spelling mistakes. I didn’t turn on my english board.