Editor’s note: The following is adapted from a letter Stephanie Hoover wrote to family and friends to ask them to support her in the Louisville Muscle Walk. We thought her characterization of the impact of her disease and her eloquent description of the community she has found within MDA were worth sharing. We hope you agree. . . .
Data released by the US Department of Labor this month showed that the unemployment rate for people with disabilities is more than double the unemployment rate of those who are considered able bodied. Many factors impact access to employment for those living with disabilities, including a system of benefits and services that are gained and . . .
Marathon Pharmaceuticals announced today it has submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for the investigational drug deflazacort for the treatment of people with Duchenne muscular dystrophy (DMD). The FDA has 60 days to determine whether the NDA is complete and acceptable for filing. Deflazacort, a glucocorticoid, works . . .
Cohl Hometown: Exeter, NH Age: 9 Diagnosis: I was diagnosed with Spinal Muscular Atrophy, Type 3, at age 8. Spinal Muscular Atrophy (SMA) is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Favorite School Subject/Activities: My favorite subject in school is social studies. Favorite People: My mom, dad, sister, Ava, and cat, Celine . . .
“For us, living unlimited is an every day thing….” X Ambassadors. From June 20 to July 31, a generous partner will give $1 to the Muscular Dystrophy Association for every #LiveUnlimited moment shared. Create your own #LiveUnlimited moment
This summer, as MDA and our families defy daily challenges together to live unlimited, we’re having a little fun. And on June 24, we’re having a whole lot of it. We’re teaming up with two of Legendary Digital Networks’ top Internet channels – Geek & Sundry, founded by actress Felicia Day, and Smart Girls, founded by Amy Poehler . . .
More than 100 Boston fire fighters and dignitaries, along with the the International Association of Fire Fighters (IAFF), MDA and Boston Fire IAFF Local 718, united today on Memorial Sunday, an annual day to honor Boston’s fallen fire fighters, to celebrate more than 60 years of partnership in the fight against muscular dystrophy, ALS and . . .
Results from a phase 3 trial to test eculizumab in patients with refractory generalized myasthenia gravis (MG) show that the drug did not have a statistically significant effect on the primary endpoint — the Myasthenia Gravis – Activities of Daily Living profile (MG-ADL), a patient-reported index of daily living assessment. Alexion Pharmaceuticals, which is . . .
Once you open up to the idea that there just might still be some good in the world, and in your life, you begin to see it. It may seem small and insignificant, at least at first. But if it’s good, notice it. Acknowledge it. Give thanks for it. ~Patty Blake We’d like to take . . .
Brayden Hometown: Fairdale, KY Age: 8 Diagnosis: Charcot-Marie Tooth (CMT) Favorite School Subject/Activities: I enjoy Math, GymTyme Cheer, and being in the spotlight. Favorite People and/or Pets: I like Spiderman, Batman, The Flash, and The Arrow. Other people I really like are my mom, dad and brothers, Dylan and Nate. I have two dogs and two cats. Interests: I love . . .
