An expression of the live unlimited spirit, stories and voices of the MDA community
Grace Hometown: Middletown, Delaware Age: 15 Diagnosis: I was diagnosed with myotonia congenita in 2006 at the MDA Clinic at A.I.duPont Hospital. Myotonia congenita is an inherited myopathy, a disease that causes problems with the tone and contraction of skeletal muscles. Favorite School Subject/Activities: Digital arts, music, and literature. Favorite People and/or Pets: I live with my parents, . . .
In two webcasts held Feb. 29 — one for investors and one for Duchenne muscular dystrophy (DMD) patients and families — PTC Therapeutics addressed the Refuse to File letter it received last week from the U.S. Food and Drug Administration (FDA) stating that PTC’s New Drug Application (NDA) for Translarna (ataluren) to treat DMD was not sufficient . . .
Researchers are looking for people with amyotrophic lateral sclerosis (ALS) to participate in a phase 1 clinical trial, sponsored by Biogen and Ionis Pharmaceuticals, to test the experimental drug BIIB067 (Ionis-SOD1Rx). BIIB067 is an antisense oligonucleotide, composed of short segments of synthetic genetic material (nucleic acid) that bind to RNA. The drug is designed to . . .
In the U.S., a disease is considered “rare” if it impacts fewer than 200,000 people. This broad definition encompasses almost 7,000 diseases —including those under MDA’s umbrella—and includes millions of Americans. In fact, 1 out of every 10 people in the U.S. are currently living with a disease that is classified as “rare.” When considered . . .
Have you supported MDA by buying a Shamrock yet? MDA’s iconic paper Shamrocks sell for $1, $5 or more in tens of thousands of retail locations across the country each February and March and help families live longer and grow stronger. This year, MDA Shamrocks feature six kids from across the country, and we’ll be . . .
Preston Harris, a 12-year-old from Berkeley Springs, W.Va., is a born competitor. So when he tried out for and made the Warm Springs Middle School seventh-grade basketball team, he was “very excited and pumped,” said his father, Jamie Harris. Even with his passion and grit, Preston wasn’t a shoo-in for the team, despite the hours . . .
My first trip to New York City may have been occasioned by my role in helping MDA launch our new brand. But to me, it was much bigger than that. For me, the trip was about making dreams come true and celebrating the beauty of life. It was about overcoming challenges and living life to . . .
Shamrock season is full swing! Have your local retailers gone green for MDA yet? MDA’s iconic paper Shamrocks sell for $1, $5 or more in tens of thousands of retail locations across the country each February and March and help families live longer and grow stronger. You can support MDA Shamrocks by adding this Twibbon to your social media . . .
CHICAGO, Feb. 16, 2016 — Lowe’s stores nationwide unite to participate in the Muscular Dystrophy Association’s iconic Shamrocks program now through March 31. This year marks 15 years of Lowe’s Shamrocks support that helps improve lives in communities across the country and build stronger futures for kids and adults with muscular dystrophy, ALS and related . . .
Shamrock season is right around the corner! Pretty soon, your local retailers will be going green for MDA. MDA’s iconic paper Shamrocks sell for $1, $5 or more in tens of thousands of retail locations across the country each February and March and help families live longer and grow stronger. This year, MDA Shamrocks feature six kids from . . .
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