An expression of the live unlimited spirit, stories and voices of the MDA community
On Wednesday, Runway of Dreams once again announced it is collaborating with the iconic fashion brand Tommy Hilfiger to launch an adaptive version of the fall children’s clothing line. Following the success of the Tommy Hilfiger Spring collection (which nearly sold out within the first week), the fall collection features a baseball jacket with concealed MagnaReady® magnets to maintain . . .
“November 1, 2011 was the day that everything changed for our family. We were sitting in a room with no windows and seemingly no air to breathe and the news came like a bulldozer: Duchenne muscular dystrophy, a muscle wasting disease with no cure that is 100% fatal. I couldn’t believe it. All I wanted to do . . .
Investigators are seeking people to participate in a phase 2 clinical trial, sponsored by Idera Pharmaceuticals, to evaluate the effect of the experimental drug IMO-8400 on skin lesions and muscle weakness in dermatomyositis. While the cause of dermatomyositis is unclear in most cases, it is known that ongoing inflammation triggered by the disease, over time, . . .
In an MDA-supported worldwide study, researchers found that surgical removal of an organ called the thymus reduced muscle weakness and lowered the need for drugs that suppress the immune system in people with myasthenia gravis (MG). MG is an autoimmune neuromuscular disease that causes varying degrees of muscle weakness and fatigue. Initial treatment typically . . .
The U.S. Food and Drug Administration (FDA) has accepted Marathon Pharmaceuticals’ New Drug Applications for deflazacort for the treatment of Duchenne muscular dystrophy (DMD) and granted Priority Review. Deflazacort, a glucocorticoid, works as an anti-inflammatory and immunosuppressant. In the United States, the drug is considered an investigational therapy, as it has not been approved by . . .
A bright light in our community has been extinguished. Ray Spooner — beloved husband, father, grandfather, son, brother, nurse midwife and cyclist — died yesterday, August 8, 2016, of ALS. Ray was diagnosed in 2014, just months after participating in the inaugural Ice Bucket Challenge, and in 2015 set off to cross an item off . . .
MDA Summer Camp is often described as the “best week of the year” for campers. But those are just words — to truly appreciate the magic, the community, the joy of MDA Summer Camp, you have to go there in person. That’s why we partnered this summer with Women Online to invite 10 incredible mommy bloggers to see . . .
Researchers are looking for boys and men, ages 5 to 18 years, to participate in a natural history study that is designed to assess the potential of imaging techniques to monitor disease progression and serve as an outcome measure for clinical trials in Duchenne muscular dystrophy (DMD). Both healthy volunteers and individuals with DMD are . . .
In a joint statement today, Biogen and Ionis Pharmaceuticals announced encouraging interim results from the late-stage ENDEAR clinical trial to test the experimental drug nusinersen in infants with type 1 spinal muscular atrophy (SMA). Based on the results, investigators have stopped the trial to allow all participants to transition into an open-label trial called SHINE, . . .
Again in 2016, MDA Summer Camps have provided more than 3,500 kids with muscular dystrophy and related muscle-debilitating diseases “the best week of the year!” At MDA Summer Camp, kids live beyond limits in a place where anything is possible. It’s a week where they’re been free to enjoy adventures like horseback riding, swimming and fishing, and they reconnected with friends, . . .
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