FSH Society Beneficiary of Variety of Fall Fundraising Events

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Creative events throughout the country to raise critical funds to further FSHD research

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I am excited to see such unique events supporting the FSH Society this fall. We are so fortunate to have incredible volunteers dedicate their time and energy to planning these entertaining events

The FSH Society, the Massachusetts-based charity that has transformed the science of the little-known and incurable disease, facioscapulohumeral muscular dystrophy (FSHD), will be the beneficiary of a collection of fundraising events this fall. From Boston to Los Angeles, each event has the same mission – to raise awareness of the FSH Society and further FSHD research.

The list of 2015 fall events include:

  •     Dance-A-Thon: Any Body Can Dance!: September 4, Brandon, FL – A night of ballroom dancing hosted by a local Fred Astaire dance studio, with drop-in group classes, dances performed by pros and amateurs, adaptive dance demonstrations, as well as, food and refreshments.
  •     Doug & Gracie NYC to DC Scooter Trip: September 6 – Doug Craig, a retired scientist who has lived with FSHD since his teenage years, will embark on a 290-mile journey from New York City’s Columbus Circle to the steps of the U.S. Capitol in Washington, D.C., on his mobility scooter. Accompanying him will be Gracie, his Bernese Mountain Dog.
  •     Musclepalooza Music Benefit: October 3, Doylestown, PA – The festive event will include music from John Beacher and Jesse Pierce featuring Barry Heimowitz. There will be a live auction, with items such as Super Bowl 50 tickets, passes to The Tonight Show with Jimmy Fallon, a JJ Watt autographed football and Sonos speakers.
  •     Cosie Laurello Memorial 5K, 10K & 1 Mile Fun Run/Walk: October 4, Geneva, OH – A beautiful lake-side run with multiple distance options to accommodate varying speeds and endurance levels. This fun event was created to honor the memory of late Delta Railroad construction president, and FSH Society board member, Cosie Laurello.
  •     A Ghostly Gala Halloween Costume Ball: October 18, Los Angeles, CA – The inaugural FSH Society LA Halloween Costume Ball will feature an evening of stylishly spooky fun with celebrity host Max Adler of the FOX television show Glee.

“I am amazed and excited to see such unique events supporting the FSH Society this fall. We are so fortunate to have incredible volunteers dedicate their time and energy to planning these entertaining events,” said Daniel Perez, founder and CEO of the FSH Society. “The funds raised from these events will help us support our research efforts for 2015.”    

Please find more information on the 2015 fall events here.

Affecting an estimated 870,000 people worldwide, FSHD is one of the most common muscle dystrophies. The genetic disorder presents a lifelong progressive loss of skeletal muscles, typically attacking the muscles of the face (facio), shoulder blades (scapula) and arms (humerus), though it may possibly progress to affect any skeletal muscle. Approximately one-quarter to one-third of patients end up in wheelchairs.

About FSH Society:

The FSH Society, founded in 1991 by two FSHD patients, is a world leader in combating muscular dystrophy. The non-profit has provided millions of dollars in seed grants to pioneering research worldwide, creating an international collaborative network of patients and researchers. The FSH Society seeks to serve as a source of information and support for all patients and families with FSHD; act as a driving force in the development of research directed towards treatments and ultimately a cure; and bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities. For seven consecutive years, the Society has received the Charity Navigator’s four-star rating, the highest distinction held by less than two percent of non-profit organizations in the country. The FSH Society offers a community of support, news and information for FSHD patients and families through its website at http://www.fshsociety.org. For more information about FSHD, please contact the Society at 781-301-6649.

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