World FSHD Day Newsletter


Today is World FSHD Day! This is a day to think of the many people living with FSHD and the researchers that have dedicated their careers to finding them a therapy. The progress made in the field of FSHD research has been amazing and Friends of FSH Research has been able to play a major role in supporting this work due to your support. Thank you!

As a result of our successful auction held in January this year, our Scientific Advisory Board had the opportunity to evaluate and select important projects to receive a grant this year. We were able to approve 5 excellent projects for funding which will soon be posted on our website in the coming months

We are thankful to you for your support and all many scientists which are working to find a treatment for those impacted by FSHD.

Terry Colella
Founder and Board President

20 June 2020

WORLD FSHD DAY is a global initiative which aims to raise awareness for FSHD – one of the most common forms of muscular dystrophy and which affects over 1 million people worldwide.

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FSHD Patient Fireside Chat with DYNE

Living with FSHD
Click the Dyne Therapeutics logo to view a short video which captured a Zoom fireside chat held with three families living with FSHD and the Dyne team.


SAVE THE DATE (just in case!)

Feb. 27th 2021
for the
17th annual Friends of FSH Research Gala
at the Lake Washington Hyatt

The COVID-19 pandemic has presented a fundraising event problem for our organization and many others. At this point, we do not know what the future for large gatherings will be but the need for funds will not disappear. Until there is a cure or effective treatment for those living with FSHD our organization will have work to do. We hope you will continue to support us throughout the coming year.

Invest in Research!
Play a role in our future fundraising!
contact us:
Due to COVID-19 the Wedgwood Fair is going Virtual
July 16th through July 18th

Browse & Shop for some of the Northwest's Finest Artwork
Visit the Wedgwood Website for more information!

Please support our work throughout the year by enrolling in AmazonSmile.
AmazonSmile donates 0.5% of all your Amazon purchases to Friends of FSH Research!
It's simple, just go to & select
'Friends of FSH Research"(tax identification #86-1108537) as your designated charity!
Thanks for giving while you shop!


Giving, while shopping Fred Meyer!
Just link your Fred Meyer Rewards card to "Friends of FSH Research" (nonprofit #83361) at When you shop, you'll be making a donation!


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