MDA Celebrates the Approval of Relyvrio from Amylyx for the Treatment of ALS

On Sept 29, the US Food and Drug Administration (FDA) granted approval of sodium phenylbutyrate/taurursodiol (Relyvrio) for the treatment of people with amyotrophic lateral sclerosis (ALS). To date, Relyvrio is the third drug approved in the United States (US) for the treatment of ALS. Relyvrio will be made available in the US and marketed by…

How the ADA’s Employment Rights Apply to Job Seekers

Learn how the ADA protects rights for job applicants during the interviewing and hiring processes.

How a Man With DMD Won His Right to Live Independently

A man with Duchenne muscular dystrophy (DMD) won his right to live independently. Young adults with disabilities should know about this legal case.

Simply Stated: Updates in LGMD Research

Limb-girdle muscular dystrophy (LGMD) is a diverse group of inherited disorders that cause progressive weakness in the hip and shoulder muscles. Weakening and thinning of these muscles in LGMD can lead to a variety of symptoms, including problems with mobility (e.g., rising out of chairs, walking independently, etc.) and difficulty raising/stretching the arms or lifting objects.…

2023 MDA Clinical & Scientific Conference

The 2023 MDA Clinical & Scientific Professional Conference, which is consistently unsurpassed in terms of impact, will take place next March in Dallas Texas. In 2022, the conference had 1,261 in-person attendees and approximately 700 virtual participants. There were 120 speakers, 32 sessions, 30 in-person exhibitors, 45 virtual exhibits and 137 virtual posters. Although there…

Quest for Success – High School Edition: Leah Zelaya

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”. This month, we celebrate back-to-school with a special, high school edition installment.  Success looks different to everyone and this monthly blog details the different paths that individuals…

Muscular Dystrophy Association Announces 70 Research Grants Totaling Over $17 Million

On Sept.19, the Muscular Dystrophy Association (MDA) announced the awarding of 70 new grants totaling over $17 million toward neuromuscular disease research. The newly funded projects aim to advance research discoveries and new therapy development in multiple areas including amyotrophic lateral sclerosis (ALS), Charcot-Marie-Tooth disease (CMT), Duchenne muscular dystrophy (DMD), facioscapulohumeral muscular dystrophy (FSHD), limb-girdle…

Accessible Fashion Hits the Runway with Double Take Fashion Show

The Double Take Fashion Show, a collaboration between the spinal muscular atrophy (SMA) community, Genentech’s SMA My Way, and Open Style Lab (OSL), kicked off 2022 New York Fashion Week on September 8th. The brainchild of a panel of individuals living with SMA, the fashion show was the first of its kind – an entire…

Election 2022: Know Your Rights

Election Day is Tuesday, November 8th.  This year, all 435 seats in the U.S. House of Representatives, 35 Senate seats, and 36 gubernatorial seats are on the ballot, in addition to candidates for numerous state and local offices.  With so many races up for grabs, every vote is critical. Everyone has a right to vote…

Research Study Alert: Observational Study of MRI Measures of Bone Quality in People with DMD

Researchers at University of Florida are seeking boys living with DMD to participate in a study designed to identify new imaging (MRI) measures that could be used to test drugs or other interventions that might make bones stronger in DMD. This study will utilize MRI to look at the femur (thigh bone) and spine in both…

Quest Media is an innovative adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities.

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QUEST PODCAST

The Quest podcast, proudly presented by the Muscular Dystrophy Association, is part of the Quest family of content. Hosted by Quest Editor-in-Chief, motivational speaker and writer Mindy Henderson.

Episode 21 – MDA Let’s Play – A Community for Everyone

MDA Let’s Play is a welcoming online gathering place for teens and adults where they play together, forge new friendships, share similar challenges, learn new skills, and sometimes get to hang out with celebrities, sports athletes, and professional creators. More than two million viewers have watched MDA Let’s Play online events on Twitch. I chat…

Episode 20 – Lights, Camera, Action – and Accessibility: Part 3

As the third podcast in our accessibility in the entertainment world, we sit down with Jonathan Lengel. Jonathan is an actor, singer, and performer who lives with a rare form of congenital muscular dystrophy. Jonathan became active in theater as a kindergartener and was recently discovered as part of a worldwide casting call to star in…

Episode 19 – Lights, Camera, Action – and Accessibility: Part 2

James Ian is a singer, songwriter, multi-instrumentalist, actor and writer who lives with spinal muscular atrophy (SMA). His song “Spaces” has over 744,000 views on YouTube and highlights the lives of others living with SMA. He worked with Genentech, a three-time Grammy nominated producer, and an executive at Universal Music to create this incredible song…