An expression of the live unlimited spirit, stories and voices of the MDA community
As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to share our 2022 blog series: “Quest for Success”. Success looks different to everyone and this monthly blog details the different paths that individuals with neuromuscular disease have taken to reach their potential and the steps . . .
Eight years ago, if you were looking for Billy Zureikat you would find him on the basketball court. The 38-year-old, former ESPN producer and current logistics manager’s passion was on the court. That all changed when years of symptoms and eventually a diagnosis in 2021 of limb girdle muscular dystrophy (LGMD) began to impact his . . .
Researchers at the Barrow Neurological Institute (BNI) and Emory University are seeking adults living with amyotrophic lateral sclerosis (ALS) to participate in the Track-ALS research study to assess whether measurements collected at home, using digital applications, are dependable and can help with tracking disease progression. Study participants will be asked to perform various at-home tests at . . .
Researchers at Cytokinetics, Inc. are seeking adults living with amyotrophic lateral sclerosis (ALS) to participate in the phase 3 COURAGE-ALS clinical trial to evaluate the safety and effectiveness of the investigational drug. In ALS, motor neurons (nerve cells that control muscle cells) are gradually lost, causing the skeletal muscles they control to become weak and nonfunctional. . . .
On May 12, the US Food and Drug Administration (FDA) granted approval to an oral suspension of edaravone (RADICAVA ORS) for the treatment of amyotrophic lateral sclerosis (ALS). To date, RADICAVA ORS is the sixth disease modifying drug approved to treat ALS. RADICAVA ORS will be made available in the United States (US) and marketed . . .
Ben Schwartz doesn’t let Duchenne muscular dystrophy (DMD) stop him from enjoying the great outdoors. This 9-year-old from Des Moines, Iowa, has wheeled up massive sand dunes at Great Sand Dunes National Park and Preserve in Colorado, strolled paved trails at Guadalupe Mountains National Park in West Texas, and skied down a snowy slope at . . .
It’s been half a century since University of California, Los Angeles, computer science professor Jacques Vidal coined the term “brain-computer interface” (BCI) and produced the first peer-reviewed papers on the idea of interpreting brain signals with a computer. Today, BCI offers huge potential to improve the lives of millions of people around the world, including . . .
Since MDA’s founding in 1950, families have come to know MDA as a critical resource to help locate support and resources. Assistance obtaining durable medical equipment is one of the primary needs that our families encounter. MDA understands that navigating insurance and equipment needs can be difficult, and we are here to help. MDA’s National . . .
Claiming Success: A Q&A about achieving your goals As we use our collective voice to effect change in 2022, the Year of Independence is the perfect time to celebrate individuals in our MDA community who are shattering expectations and forging forward to achieve their goals. The personal story of the Honorable Robert Pipia, a judge in . . .
Building on MDA’s legacy of innovation in research, care, and fundraising, MDA brought families and the community together on March 17th for a Volunteer Tribute Reception in Studio A at the Grand Ole Opry House in Nashville, TN. Declared an official “Day of Recognition” by Tennessee Governor Bill Lee, the celebration honored three local champions with . . .
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