Walk Pioneers Lead the Way!

This September and early October, the FSH Society will host its new signature fundraising event, the Walk & Roll to Cure FSHD in five communities from coast to coast.  These Volunteer Leaders are paving the way for their communities to raise funds and increase awareness! 5 Brave Walk Pioneers have agreed to attend monthly training sessions, beta-test … Read more of “Walk Pioneers Lead the Way!” »

#GivingTuesday 2017 is Just Around the Corner!

Join us on Tuesday, November 28th, 2017 as we participate in the 6th annual #GivingTuesday! #GivingTuesday is a global day of giving fueled by social media and collaboration following the widely recognized shopping days of Black Friday and Cyber Monday. Known as the unofficial kickoff to the giving season, every year philanthropies are celebrated and communities … Read more of “#GivingTuesday 2017 is Just Around the Corner!” »

Super Bowl ticket auction!

We are holding a virtual auction for two pairs of tickets (4 total) to Super Bowl 52, which takes place at U.S. Bank Stadium in Minneapolis, Minnesota on February 4th, 2018. These tickets are being provided by our connection at NFL Films. The exact seat locations will be known about two weeks before the game. … Read more of “Super Bowl ticket auction!” »

Forget Me Knot Fundraiser, Extended until September 15th!!

UPDATED! Thank you to everyone who donated to Michelle’s Forget Me Knot fundraising campaign. We didn’t quite reach our $50,000 goal, so Michelle has extended the deadline to donate to September 15th!! We are so grateful to Michelle and Dave Mackay’s matching gift offer, and for this opportunity for more of us to rise to the challenge! … Read more of “Forget Me Knot Fundraiser, Extended until September 15th!!” »

Fourth Annual Songs in the Key of Steven Blier (PHOTOS)

” order_by=”sortorder” order_direction=”ASC” returns=”included” maximum_entity_count=”500″] We had a wonderful Bay Area FSHD Family Day conference with speakers from Stanford, UC Davis, University of Nevada Reno, followed by a lovely gala auction and concert featuring the luminous Amanda Lynn Bottoms and Dimitri Katotakis, singing their hearts out with our beloved Steven Blier. Thank you to all … Read more of “Fourth Annual Songs in the Key of Steven Blier (PHOTOS)” »

Our San Francisco Concert and Patient Meeting is right around the corner!

Join us for our annual San Francisco Concert and Conference, given in memory of Joyce Hakansson. Don’t miss our FSHD Family Day Conference and Songs in the Key of Steven Blier benefit concert on Saturday, July 15, at San Francisco’s Jewish Cultural Center. This is the Bay Area’s premier FSHD networking and advocacy event! Our conference provides an exceptional … Read more of “Our San Francisco Concert and Patient Meeting is right around the corner!” »