An endurance challenge, a cherry picker and a myasthenia gravis diagnosis
Gina Pieroni’s passion for MDA fundraising started with an endurance challenge, a cherry picker and desire to help others.
Strongly
An expression of the live unlimited spirit, stories and voices of the MDA community
FDA Approves First-Ever Treatment of SMA
The U.S. Food and Drug Administration (FDA) has approved Biogen’s nusinersen (brand name Spinraza) for the treatment of spinal muscular atrophy (SMA).
A Year of Progress and Promise
MDA began 2016 with an ambitious blueprint, full of changes and improvements — all designed to help us fulfill our mission promise to free individuals and families from the harmful effects of muscular dystrophy and related life-threatening diseases. Now, we reflect on our accomplishments and give thanks to our supporters.
What Happens When the Caregiver Needs Care?
When Erin Brady Worsham’s husband and primary caregiver was temporarily unable to provide care, major adjustments had to be made.
“Joe Akmakjian: National Ambassador” Season One Recap
Joe Akmakjian had a whirl wind year serving as MDA’s first adult National Goodwill Ambassador! Check out some of his highlights from 2016.
CMS Study Seeks Participants
Researchers are looking for people with congenital myasthenic syndrome (CMS) to participate in a phase 3 study being conducted by Catalyst Pharmaceuticals to test the experimental drug amifampridine phosphate.
Amifampridine phosphate is a potassium channel inhibitor designed to cause greater stimulation of muscle by prolonging nerve signals and is expected to help treat muscle weakness in people with CMS. The drug has shown promising results in treating patients with a related disorder called LEMS.
Boy with juvenile dermatomyositis scores a touchdown
For more than 60 years, firefighters have teamed with MDA to fight back against muscular dystrophy, ALS and related life-threatening diseases.
For one firefighter, the cause became very personal when his son, Chandler Mallen, was diagnosed with juvenile dermatomyositis, a neuromuscular disease that involves inflammation of the muscles. When Chandler asked his father — Scott, a firefighter who has collected donations for MDA’s Fill the Boot program for almost 25 years — if he’d lose the use of his legs, he didn’t wait for an answer.
“Even if I do,” Chandler said, “I’ll never stop trying.”
Encouraging Clinical Study Data Reported for ALS Drug Edaravone
Osaka-based Mitsubishi Tanabe Pharma has reported encouraging 12-month efficacy and safety data for edaravone (brand name Radicava) for the treatment of ALS. Edaravone is delivered by intravenous injection. It’s thought to work by relieving the effects of oxidative stress, which, in people with ALS, has been suspected to play a role in the death of . . .
Bye Bye, Betty: Things I Learned on my First Trip With Medical Equipment
When I was 25, I took an unlikely job as an editor at a travel magazine. As a journalism graduate, the editing part of the job was a natural fit; as someone who’d never flown on a plane, the traveling part seemed a little daunting. I’d been diagnosed with Charcot-Marie-Tooth disease six years prior, but . . .
Iowa State Goodwill Ambassador, Gianna, Shares a Powerful Message
Gianna Schwartz was born to write. Just 10 years old, the fifth-grader from Bettendorf, Iowa, has already won writing contests sponsored by PBS and participated in poetry slams. She’s even written a children’s book that was purchased at an auction by a Major League baseball player. Gianna — who is the Iowa State Goodwill Ambassador . . .
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