FSH Society Will Host Variety Of Fundraising Events For Facioscapulohumeral Muscular Dystrophy Awareness

Margarida Azevedo, MSc avatar

by Margarida Azevedo, MSc |

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The FSH Society, a nonprofit, patient-driven organization supporting research and education for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy, recently announced it will be the beneficiary of a number of fundraising events during this fall. The events which are aimed to raise awareness for the FSH Society and further FSHD research, will take place all over the country, from Boston to Los Angeles.

Facioscapulohumeral muscular dystrophy is a disorder characterized by muscle weakness and wasting (atrophy). This condition gets its name from the muscles that are affected most often: those of the face (facio-), around the shoulder blades (scapulo-), and in the upper arms (humeral). The signs and symptoms of facioscapulohumeral muscular dystrophy usually appear in adolescence. However, the onset and severity of the condition varies widely. Milder cases may not become noticeable until later in life, whereas rare severe cases become apparent in infancy or early childhood.

Researchers have described two types of facioscapulohumeral muscular dystrophy: type 1 (FSHD1) and type 2 (FSHD2). These two types have the same signs and symptoms and are distinguished by their genetic cause.

Facioscapulohumeral muscular dystrophy has an estimated prevalence of 1 in 20,000 people. About 95 percent of all cases are FSHD1; the remaining 5 percent are FSHD2.

The list of the FSH Society 2015 fall events include:

  •     “Dance-A-Thon: Any Body Can Dance!”, is an event that includes a night of ballroom dancing hosted by a local Fred Astaire dance studio, and there will be dances performed by amateurs and pros drop-in group classes, adaptive dance demonstrations. Refreshments and food will be provided. The event will take place in Brandon, FL on September 4th.
  •     “Doug & Gracie NYC to DC Scooter Trip”, an event delivered by Doug Craig a retired scientist who suffered with FSHD when he was a teenager, who will initiate a 290-mile journey from New York City’s Columbus Circle to the steps of the U.S. Capitol in Washington, D.C.. He will do his journey in a mobility scooter accompanied by his Bernese Mountain Dog. This event will happen on September 6th.
  •     “Musclepalooza Music Benefit”. This event will include music from John Beacher and Jesse Pierce featuring Barry Heimowitz. There will be a live auction, with items such as passes to The Tonight Show with Jimmy Fallon, Super Bowl 50 tickets, Sonos speakers and a JJ Watt autographed football. The event will take place in Doylestown, PA on October 3rd.
  •     Cosie Laurello Memorial 5K, 10K & 1 Mile Fun Run/Walk”, is a lake-side run with multiple distance options to accommodate variable speeds and levels of endurance. The event was produced to honor the memory of late Delta Railroad construction president, and FSH Society board member, Cosie Laurello. This event will happen on October 4th, in Geneva, OH.
  •     A Ghostly Gala Halloween Costume Ball: 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. The event will take place in Los Angeles, CA on October 18.

“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.”