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FSH Society sets all-time record in funding research

From our ad in Quest magazine.

From our ad in Quest magazine.

The FSH Society announced a new round of grant award recipients bringing the Society’s total grant awards to over $890,000 in 2015.

This round of award winners were among a competitive group submitted in February 2015 for review by the FSH Society’s Scientific Advisory Board. Winning projects from this round include deep dives into how the genetics of FSHD affects the early development of muscle cells and into the lingering and all-important mystery of why muscle weakens in FSHD. Continue reading

Hot off the press: FSHD care guideline

Evidence-based, if incomplete, new guideline is a major step forward.

2014FSHD-Connect-byRV-190All too often, FSHD patients encounter doctors whose knowledge of the disease seems to be gleaned from dusty textbooks. A patient disabled by pain might be told that “pain is not associated with FSHD.” Or a physician may not think to order lung function tests, even though a patient feels too exhausted every morning to get out of bed.

One can hardly blame the doctors. Most have rarely, if ever, seen an FSHD patient, and between 15-minute consultations, they barely have time to breathe, much less study up on the latest research.

That’s why the publication today of a new care guideline for FSHD by the American Academy of Neurology (AAN) is a big deal. Continue reading

First-Ever FSHD Evidence-based Care Guideline Published by the American Academy of Neurology

From PRWeb

Contact Information:
Rosie Hale
617-779-1893
FSHSociety@shiftcomm.com

Guideline is a landmark step forward for the diagnosis; comes as a result of FSH Society’s advocacy efforts over the past 20 years

BOSTON, MA (July 27, 2015) – The FSH Society, the Massachusetts-based charity that has transformed the science of the little-known and incurable disease, facioscapulohumeral muscular dystrophy (FSHD), today announced the introduction of the first-ever care guideline for FSHD by the American Academy of Neurology (AAN). The FSHD care guideline is published today. Continue reading

FSH Society Awards New Round of Research Grants to Support Critical Research on FSH Muscular Dystrophy

From PRWeb

This round of award winners were among a competitive group submitted in February 2015 for review by the FSH Society’s Scientific Advisory Board. Winning projects from this round include deep dives into how the genetics of FSHD affects the early development of muscle cells and into the lingering and all-important mystery of why muscle weakens in FSHD. Continue reading

FSH Society Ambassador is crowned Ms. Wheelchair USA

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We are so proud to announce that our very own FSH Society Ambassador Skylar Conover was crowned Ms. Wheelchair USA last night at the national pageant. Our Board member Linda Laurello was there to cheer her on and receive a $5,000 donation from sponsor Munzee. Congratulations Skylar!! You are an inspiring young woman, a great advocate for the FSHD and disabled communities. Read more about Skylar’s mission here.

21st Century Cures passes the U.S. House

USCapitolThe U.S. House of Representatives on July 10th passed the 21st Century Cures Act by a lopsided 344 to 77. The bill would increase funding to the National Institutes of Health by nearly $8.75 billion over five years and increase funding to the Food and Drug Administration by $550 million over the same period.

The FSH Society’s testimony to the U.S. Congress on FY2016 spending urged lawmakers to call for NIH to increase annual spending on FSHD research from the current $7 million to $21 million. Continue reading

Lake party makes waves!!

Michelle and Dave Mackay’s Lake Party at their home in Hickory Corners, Michigan, created quite a stir this past Saturday night.We heard many express the opinion that this FSH Society benefit has become the social event of the season for communities around Battle Creek and Kalamazoo. Guests snapped up hundreds of $20 raffle tickets for a chance to win a tempting array of jewelry, home decor and rare wines. Bill Parfet was superb as the auctioneer, consistently coaxing people to bid many multiples above the retail value on items that ranged from Italian vacation rentals to a girls’ night out package. The evening raised approximately $90,000, which the Mackay’s are matching for a total of around $180,000. Our sincere thanks to all who supported this wonderful event!!

MackayLakeParty

 

Shop for a cause! Check out our SF auction offerings!

We’ve begun our Ten Day Countdown of the second annual “Songs in the Key of Steven Blier” benefit concert in San Francisco, on July 17. Be sure to purchase your tickets ASAP, or make a donation in support of our hard-working volunteers! Check out these delectable auction items and start plotting your bidding strategy! Want to bid in absentia? Contact us with the item numbers, your maximum bids and payment information, and we will bid on your behalf. You will be responsible for any additional shipping costs.

Click “read more” to browse our auction gallery! Continue reading