An expression of the live unlimited spirit, stories and voices of the MDA community
“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 . . .
Sarepta Therapeutics announced today that the U.S. Food and Drug Administration (FDA) has requested that the company provide dystrophin data from biopsies that were taken as part of the ongoing confirmatory study of eteplirsen, called PROMOVI. The data was requested by the agency in connection with its ongoing evaluation of Sarepta’s New Drug Application (NDA) . . .
Individuals with central core disease (CCD), centronuclear myopathy (CNM), multiminicore myopathy (MMC) or other diseases caused by a mutation in the ryanodine receptor (RYR-1) are invited to attend the first-ever RYR-1 International Family Conference, organized by the RYR-1 Foundation, July 22-24, 2016, in Baltimore. At the conference, you will be able to view presentations by . . .
MDA Amplify is a new mobile app that revolutionizes the way you — an MDA supporter, partner or family — can share MDA news on your own social media channels. To become an MDA Amplifier, download the MDA Amplify app from iTunes or Google Play store (it’s free!), connect your personal social media accounts, and . . .
Although I would later come to associate MDA Summer Camp with the words joy, freedom and independence, that’s not how I felt in the beginning. In fact, I was terrified to go. When my mom told me she had signed me up for MDA’s summer camp in Empire, Colorado, I threw a massive temper tantrum . . .
Sign up for MDA news & updates.
