MDA - Austin

Simply Stated: Updates in SELENON-Related Myopathy - Quest | Muscular Dystrophy Association SELENON (SEPN1)-related myopathy (SELENON-RM) is a rare congenital neuromuscular condition characterized by slowly progressive axial (trunk and head) muscle weakness, early-onset rigidity of the spine, scoliosis (sideways curve of the spine), and respiratory insufficiency (breathing impairment).

Join us on Thursday, July 18, from 7-8pm ET for the MDA Advocacy Institute: Finishing 2024 Strong – Top Legislative Priorities. Learn about eliminating SSI savings penalty, urging treatments for pediatric rare disease, and helping kids access health care. These legislative priorities are vital for improving access to care and support for children with rare neuromuscular diseases, and your voice is crucial in pushing them forward. Register now: https://mdausa.webex.com/weblink/register/r82b40097105001095307d05c59756200

Every person living with ALS who joins the National ALS Registry makes a valuable contribution to our understanding of this rare disease. Join the Registry and help us learn more about ALS: cdc.gov/als/ALSJoinALSRegistry.html

On this day in 1939, Lou Gehrig, the legendary New York Yankees first baseman, delivered his iconic "Luckiest Man Alive" speech. Despite being diagnosed with Amyotrophic Lateral Sclerosis (ALS), Gehrig's words echoed resilience, gratitude, and an unbreakable spirit.

"For the past two weeks you have been reading about a bad break. Yet today I consider myself the luckiest man on the face of the earth."

Today, on the 85th anniversary of his speech, we honor his memory by supporting people living with ALS and striving for a cure. Let's continue to raise awareness about ALS, support ongoing research, and extend our compassion to people battling this relentless disease. Learn more and donate today at MDA.org/EndALSwithMDA

Clinical Trial Alert: Phase 2 Pivotal Study of Sevasemten (EDG-5506) in Adults with Becker Muscular Dystrophy - Quest | Muscular Dystrophy Association Researchers at Edgewise Therapeutics are seeking adults living with Becker muscular dystrophy to participate in a global Phase 2 pivotal study to evaluate the safety and efficacy of sevasemten in adults.

Celebrating Recent Significant Milestones in Disability Rights - Quest | Muscular Dystrophy Association The Rehabilitation Act (otherwise known as the Rehab Act, or simply “504”) is the grandfather of disability rights law; it provides the foundation on which other seminal pieces of legislation stand, including the Americans with Disability Act (ADA) and Section 1557 of the Affordable Care Act.

June 19 marks the birthday of the legendary Yankee first baseman, Lou Gehrig. Today, we celebrate our commitment to his strength and resilience by continuing to lead funding in research, care, and advocacy to end ALS. Let's honor his memory, and the work of his wife Eleanor Gehrig who served as MDA’s Campaign Chairman, by supporting MDA's mission to find a cure for ALS and provide vital care and advocacy for families living with this disease. Every donation brings us closer to a world without ALS. Join us in making a difference and donate $100 or more and receive your own limited-edition END ALS jersey: MDA.org/EndALS

Today, MDA observes Juneteenth, a significant day in American history commemorating the emancipation of enslaved African Americans. On this day, we honor the resilience, contributions, and cultural heritage of the Black community. We encourage our community to take this time to reflect, celebrate, and participate in local events and initiatives dedicated to recognizing the importance of this occasion. Learn more from Smithsonian's National Museum of African American History and Culture: https://s.si.edu/45lahgn

Join us for MDA Advocacy Institute: Diversity in Clinical Trials on Thursday, June 20 at 7pm ET. MDA’s Paul Melmeyer, EVP, Public Policy and Advocacy, and Shaun Hill, Manager, Public Policy and Advocacy, will host a conversation on the latest updates and roadmap to improve diversity in clinical trials. Register for free and save your spot here: https://mdausa.webex.com/weblink/register/r8fd833f519f9cba6971d62bebc4ff526

First generic of Emflaza oral suspension approved by FDA for DMD The FDA has approved the first generic version of Emflaza oral suspension for people, 5 and older, with Duchenne muscular dystrophy.

Today on Lou Gehrig Day, we honor a legend whose strength continues to inspire millions. Across the nation, MLB teams and fans celebrate his legacy and support the fight against ALS. Join our MDA Let’s Play livestream at 2:15pm ET from Oracle Park in San Francisco to experience a unique initiative where gaming and community support intersect, empowering people living with ALS and related neuromuscular diseases. To join, visit https://www.twitch.tv/mda_letsplay

Lou Gehrig's courage transcends time, and this Sunday, June 2 at Oracle Park with the San Francisco Giants vs New York Yankees, we will honor his legacy and invite you to join the MDA Let’s Play gaming community livestream at at 11:15 PT / 2:15 ET!

We celebrate Gehrig’s enduring spirit in every MLB ballpark and in our hearts. Join our Let’s Play community for this livestream that combines fun and advocacy, providing a platform for people living with ALS and related neuromuscular diseases to connect and find strength. Tune in at https://www.twitch.tv/mda_letsplay

At MDA, we pause this Memorial Day to honor and remember the brave souls who served our country with valor and dedication. Among these heroes, are the military veterans who faced an unexpected adversary after their service: ALS. Research indicates that military veterans are twice as likely as the general public to be diagnosed with ALS. To our fallen heroes, those who have passed from ALS, and their loved ones, we offer our deepest respect and gratitude.

MDA's Pinup & Roundup Campaigns Kick Off Across the Nation to Support Summer Camp for Kids and Young Adults Living with Neuromuscular Diseases | Muscular Dystrophy Association Support from this retail campaign provides the opportunity for over 800 kids and young adults to experience a life-changing week-long summer camp at no cost to families. NEW YORK, NY, May 20, 2024 — The Muscular Dystrophy Association (MDA) announced today the launch of its annual MDA Summer Camp r...

Today is the day to Drink One for Dane! Celebrate 18 years of our partnership with Dutch Bros Coffee and help make a difference for those living with ALS. Visit your local DB or donate online today: https://bit.ly/D14D2024 April Warnecke

Muscular Dystrophy Association Celebrates Historic Advancements in Accessible Air Travel as Congress Passes FAA Reauthorization | Muscular Dystrophy Association Milestone Reached Following MDA Advocacy Campaign for Unprecedented Progress in Accessible Air Travel Washington, DC, May 15, 2024 – Today, the Muscular Dystrophy Association (MDA) celebrates a landmark achievement in accessible air travel as Congress grants final passage to the Federal Aviation A...

Dutch Bros to hold annual Drink One for Dane giveback | Muscular Dystrophy Association GRANTS PASS, Ore. (May 1, 2024) - Help Dutch Bros support the Muscular Dystrophy Association (MDA) and their mission to end ALS! For every drink sold on Friday, May 17, the Dutch Bros Foundation will make a donation to MDA. MDA is the leading non-profit organization in Amyotrophic Lateral Sclerosis....