Boston, MA / February 11, 2013 At the age of 28, Kevin Kirby was diagnosed with a disease that most people have never heard of. Called Facioscapulohumeral Muscular Dystrophy, or FSHD, the disorder is named for the body areas that are typically affected: the face (facio-), shoulder blades (scapula-) and upper arms (humeral). The disease… Read More »
The Centers for Disease Control Spotlights FSH Muscular Dystrophy
The FSH Society Answers Questions About the New Gene for FSH Muscular Dystrophy
Boston, MA / January 24, 2013 Facioscapulohumeral muscular dystrophy (FSHD) is a disease most people have never heard of, even though it is one of the most common forms of muscular dystrophy. Having a name that is daunting to pronounce and spell doesn’t help. But being an “invisible” disease has its up side. Frustrated by… Read More »
Progress in FSHD Muscular Dystrophy Research Hailed at International Meeting
San Francisco, CA / November 08, 2012 Just two decades ago, the scientific world largely ignored a mysterious disease that causes muscles to weaken throughout the body. Called fascioscapulohumeral muscular dystrophy (FSHD), this disorder literally robs people of their smiles as their facial muscles fail. The shoulder blades jut out like wings and the spine… Read More »
Celebrities Come Out for FSH Muscular Dystrophy
Los Angeles, CA / October 03, 2012 Fans of the Fox TV hit series “Glee” know [Max Adleras the actor behind “Dave Karofsky”, the closeted football jock who tormented Kurt Hummel but later took a courageous stand against bullying. Off camera, Adler is a gentle champion for FSH muscular dystrophy (FSHD), a disabling muscle disease from which… Read More »
Musical Stars Shine for FSH Muscular Dystrophy
New York, NY / September 25, 2012 For years, Steven Blier has occupied the limelight as a celebrated pianist and advocate for the art song. He has toured with opera superstars like Renée Fleming. Singers line up at his door to be coached to greatness. As Artistic Director of the New York Festival of Song, he brings vocal… Read More »