An expression of the live unlimited spirit, stories and voices of the MDA community
Few things are better than the perfect gift — except, perhaps, the gift that gives love to the recipient and to a whole community as well. This season, surprise your family with gifts that give to MDA families — and MDA research — too. Good Reads Stack your family bookshelf with must-reads that help explain . . .
Results from the STEADFAST phase 3 clinical trial in Friedreich’s ataxia (FA) failed to show that the drug ACTIMMUNE® (interferon gamma-1b) was effective against any of the study’s disease measurements, according to Horizon Pharma. The study hoped to slow disease progression as measured by a functional rating scale assessing capacities such as speech, ability to . . .
OK, friends. I’ve got some really great news. As you know, MDA’s commitment to improving the lives of young adults living with muscle-debilitating diseases is near to my heart. It’s why I chose to accept the role as the first adult MDA National Goodwill Ambassador. It’s been almost a year since we began implementing MDA’s . . .
For space anthropologist Keirsten Snover, living unlimited means going where no man or woman has gone before. “As far back as I can remember, I always loved science,” Keirsten says. “I have always been fascinated by all the different fields.” Keirsten has mitochondrial myopathy. As a result of the disease’s progression, she uses a wheelchair . . .
Five Questions with Researcher Matthew Disney Matthew Disney, a professor at the Scripps Research Institute in Jupiter, Fla., was awarded an MDA research grant totaling $300,000 over a period of three years to optimize two novel drug-like compounds — one that targets toxic RNA in myotonic dystrophy and another that targets toxic RNA in ALS . . .
Raymond (Ray) Walter, who has Duchenne muscular dystrophy, graduated college with degrees in physics, mathematics and economics at age 18. He is currently continuing his doctoral studies in mathematics and physics at the University of Arkansas, where he is a Distinguished Doctoral Fellow and National Science Foundation Graduate Research Fellow. Raymond has also recently been . . .
For most, a trip to Target is just a way to cross off another item on a lengthy to-do list, or a quasi-addictive way to reduce stress via retail therapy. For 14-year-old Ethan Pyles and his mother, Sandra, a trip to Target brought renewed hope, grateful hearts, and optimism for thousands of boys who have . . .
Researchers at the University of Kansas and Arkansas Children’s Hospital are looking for boys and men age 10 years and older with Duchenne muscular dystrophy (DMD) to participate in a phase 3 clinical trial. The study, called SIDEROS, is designed to help researchers determine the safety and efficacy of idebenone (brand name Raxone), an experimental . . .
Owen Prenger of Brandon, S.D., is the embodiment of the MDA’s “Live Unlimited” motto. The active 10-year-old has numerous passions and interests. Above all, he loves to learn and is in the gifted education program in his fourth-grade class. Outside of school, he loves to play Minecraft, his favorite video game, and watch football, especially his . . .
I had never heard of ALS (amyotrophic lateral sclerosis) before my dad was diagnosed. Those three letters had no significant meaning to me or my family. Now, they are still all around us, in our day to day, swirling through our minds like windswept leaves. They are forever present, always staring back at us, in . . .
Sign up for MDA news & updates.
