Third Annual Cape Cod Walk 'n' Roll for FSH Muscular Dystrophy on October 1

Tomorrow, October 1, 2011, FSHD patients and their friends, advocates, and families will join in the Third Annual Cape Cod Walk 'n' Roll for FSHD (facioscapulohumeral muscular dystrophy).

Participants will walk and roll (in wheelchairs and motorized scooters) on a two-mile loop of the Harwich Bike Trail to raise awareness and funds for research to cure FSHD, one of the most common forms of muscular dystrophy, affecting nearly one in 14,000 worldwide.

What: Third Annual Walk 'n' Roll for FSH Muscular Dystrophy

Where:  Meet at Harwich Community Center – Oak Street in Harwich, MA.

When:  October 1, registration at 12:00 pm.  Walk 'n' Roll starts at 1:00 pm.

Why:   Help raise funds for FSH Society research efforts.

How:   Registration online at www.fshsociety.org/capewalk, by phone at (617) 658-7878, or the day of the event.  For more information, please contact:  Rich Holmes at [email protected], the FSH Society at [email protected], or the event's Facebook community page at Cape Cod Walk 'n' Roll for FSH Muscular Dystrophy.

"This event is a fun and very social way for us to renew our commitment to fighting this disease and get to know each other, at the same time," says Daniel Paul Perez, the founder, president and CEO of the FSH Society and a FSHD patient. "I urge anyone who has a friend or family member(s) dealing with this disease or anyone who would like to help contribute to or sponsor a very worthy cause to join us on the Cape at this most beautiful time of year on October 1."

FSHD is a life-long, progressive disease and can cause severe loss of all skeletal muscles (beginning with the face, shoulders, upper arms and progressing to the legs and feet). The disease is crippling and can be life shortening.  FSHD can affect entire families and all ages, though the disease usually starts in the second and third decades of life.

The FSH Society's mission is to support research to find causes and treatments. Research is progressing.  Last summer scientists discovered that a gene that is not supposed to be expressed in muscle, called DUX4, is turned on in FSHD.  This summer researchers in Ohio, Italy, and Washington State reported success in turning off another FSHD candidate gene, called FRG1, in mouse models of FSHD.  The investigators believe the gene therapy they used, called "RNA interference," could work in targeting other genes like DUX4 that contribute to FSHD.  

"These are early days for RNAi therapeutics, and, of course, we are pleased with the success of these proof of concept studies in models of FSHD and the lack of toxicity," says Perez. "However, it will take many more millions of dollars to continue to refine the research and take it to the next level.  We need advocacy and funding, and we are looking to the public to help."

SOURCE FSH Society