Up and Coming Fashion Designer with LGMD Thrives
Up and coming designer living with LGMD Tobie Roberts shares how she is tackling the lack of inclusivity in the fashion industry.
Strongly
An expression of the live unlimited spirit, stories and voices of the MDA community
A Close Friend Finds Inspiration in MDA Team Momentum
Joe Akmakjian has always been an avid fan of MDA Team Momentum but this year he had an extra special reason to root them on.
Sawsan Abuosbie, Who Lives with SMA, Talks College, Job Hunting and Work Life
In recognition of National Disability Employment Awareness Month, Sawsan, who lives w SMA, shares her experience of joining the work force.
FDA Grants Orphan Drug Designation to Stealth BioTherapeutics’ Experimental Mitochondrial Myopathy Drug Elamipretide
Elamipretide, which treats muscle weakness caused by mitochondrial disease, has received FDA Orphan Drug Designation
Buy Your Movie Tickets for “I’ll Push You” Now
Two lifelong friends, Justin Skeesuck and Patrick Gray, embarked on an epic, five-and-a-half-week, 500-mile-long journey on Spain’s famed Camino de Santiago. These friends physically and mentally pushed each other, as Justin, living a neuromuscular disease, conquered the pilgrimage in a wheelchair.
Five Questions with Researcher Maya Maor Nof
Maya Maor Nof of Stanford University School of Medicine received the 2017 SSSI-MDA Fellowship Award to study ALS.
MDA Taps Global Health Care Leader as CEO to Leverage New Breakthroughs and Amplify Mission
“It truly feels as if my entire career path has been leading me to this role,” said Vos. “I am excited to bring my passion for patient care and advocacy, as well as my success using new technology to build new, innovative communication approaches, to lead MDA in the fast-changing world of research and patient care.”
Newly Married Couple Asks for Donations to MDA in Lieu of Wedding Gifts
In lieu of gifts, the Fosters, who met at MDA Summer Camp, asked wedding guests to make a donation to MDA instead.
Camino de Santiago Hiker with BMD Finishes His Trek
Bryan Steward, who lives with BMD, shares that he completed his trek on the 500-mile Camino de Santiago.
FDA Advisory Committee: Data in Support of Translarna ‘Inconclusive’
The FDA yesterday convened a meeting with the PCNS, to review the NDA, for ataluren (brand name Translarna) to treat some forms of DMD. Following a presentation of the data in support of the NDA by PTC Therapeutics the overwhelming majority (10 out of 11) suggested that although it is possible that Translarna may be effective, the data are inconclusive and more work is needed to determine whether, in fact, it is.
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