Money kept in savings accounts pulls double duty: It’s accessible to address urgent, unexpected expenses, and it’s also a key component of a long-term investment strategy. In the face of a sudden job transition or a vehicle breakdown, for example, savings can provide flexibility and resilience. For people living with neuromuscular diseases, “Every day won’t . . .
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 . . .
Researchers at Goldsmiths University of London are seeking people living with muscular dystrophy (MD) and their primary caregivers to participate in a survey about their quality of life. The aim of the survey is to better understand how quality of life of an individual and their primary caregiver is affected by progressing MD. In this study, . . .
Researchers at Alexion Pharmaceuticals are seeking adults living with generalized myasthenia gravis (gMG) to participate in a phase 2 clinical trial to evaluate the safety, effectiveness, and pharmacological properties of the investigational drug ALXN2050. ALXN2050 is designed to target a component of the immune system (known as complement), which underlies many autoimmune disorders including gMG. People . . .
Researchers at Alexion Pharmaceuticals are seeking adults living with dermatomyositis to participate in a phase 2 clinical trial to evaluate the safety, effectiveness, and pharmacological properties of the investigational drug ravulizumab (Ultomiris). Ravulizumab is designed to target a component of the immune system (known as complement), which underlies many autoimmune disorders including dermatomyositis. Treatment with ravulizumab . . .
MDA Summer Camp has been a favorite tradition for our young community for over 65 years. For one week every year, children and teens receive the opportunity to gain critical life-skills, including self-confidence, independence, and self-advocacy, while making lifelong friendships in an inclusive and accessible environment. In 2020, in an effort to keep this popular . . .
For more than 70 years, the Muscular Dystrophy Association (MDA) has been committed to empowering people living with muscular dystrophy, ALS, and related neuromuscular diseases to reach their potential. Through the decades, MDA has led the way through our innovations in care, research, and advocacy. This year, we go bigger. In an interview with . . .
Broken wheelchairs. Inaccessible seating. Hard to navigate aircraft. For too many in the neuromuscular community, traveling by air is not accessible. We sat down with Paul Melmeyer, MDA’s VP of Public Policy and Advocacy to hear about his recent appointment to the Air Carrier Access Act Advisory Committee and the Association’s work on accessible air . . .
Researchers at Russell Sage College are seeking parents or legal guardians of individuals with spinal muscular atrophy (SMA) to participate in a survey about the communication abilities of the affected individuals. Analysis of the current communicative behaviors used by individuals with SMA will help researchers develop communication systems that better address the needs of this population. . . .
Researchers at Rare Disease Research, LLC are seeking boys between the ages of 7-years-old and 13-years-old who are living with Duchenne muscular dystrophy (DMD) to participate in the phase 3 MIS51ON trial to evaluate the safety and efficacy of high dose eteplirsen (brand name Exondys 51) to treat DMD. Eteplirsen is designed to promote production of . . .
