MDA Georgia

In celebration of Disability Independence Day, the team behind the award-winning film ‘Good Bad Things’ and AMC Theatres have announced that the movie will be presented in 50 AMC Theaters across the US on August 15th. The film follows Danny (Danny Kurtzman), an entrepreneur with a physical disability who reluctantly tries a dating app. An unexpected match with Madi (Jessica Parker Kennedy), an enigmatic photographer, challenges him to be vulnerable and sparks a profound journey of self-acceptance with the support of his long-time best friend Jason, (Brett Dier).

Buy tickets here: https://www.amctheatres.com/movies/good-bad-things-77505

If you live with or provide care for an individual living with limb-girdle muscular dystrophy (LGMD) type 2C/R5 (gamma-sarcoglycanopathy), LGMD2D/R3 (alpha-sarcoglycanopathy), or LGMD2E/R4 (beta-sarcoglycanopathy), you may be eligible to take an online survey about your experience living with an LGMD. The survey, co-created by Sarepta Therapeutics and MDA, covers several topics, such as your experience with reaching a definitive LGMD diagnosis and LGMD’s impact on your health and day-to-day activities. The deadline for participation is Tuesday, July 30.

As a thank you for sharing your time, eligible study participants will be paid $75 via an electronic gift card upon completion of the online survey. The survey will take approximately 45 minutes to complete and can be completed from your phone, laptop/computer, or tablet.

Please note this survey is a non-interventional (non-treatment) research study and will have no impact on current or future clinical trial eligibility.

If you are interested in participating, please email [email protected] with “LGMD – Patient/Caregiver Survey” as the subject line.

This study is sponsored by Sarepta and conducted by Lumanity. By emailing the above email address, you will be connected to the Lumanity Research Team.

Writing About Adversity Leads to Unexpected Benefits - Quest | Muscular Dystrophy Association Chris Anselmo, who lives with limb-girdle muscular dystrophy (LGMD), shares why he started writing about handling adversity.

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).

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.

Muscular Dystrophy Association Applauds Expanded US FDA Approval of ELEVIDYS Gene Therapy for Duchenne Muscular Dystrophy Patients Ages 4 and Above | Muscular Dystrophy Association Milestone Expanded Approval Brings Hope for Families Living with Duchenne Muscular Dystrophy NEW YORK, June 20, 2024 - The Muscular Dystrophy Association (MDA) celebrates the U.S. Food and Drug Administration’s expanded approval of ELEVIDYS (delandistrogene moxeparvovec-rokl). The efficacy supplem...

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

When you donate to Muscular Dystrophy Association at Circle K you’re helping send kids and young adults with and related diseases to – at no cost to their families. Find a store near you https://www.mda.org/summer-camp/retail

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.

Fairfax County, VA Local 2068, Magic Wheelchair, and MDA join forces to fulfill 10-year-old's dream - IAFF Katherine Jeong, the 10-year-old winner of the 2023 Muscular Dystrophy Association (MDA) and Magic Wheelchair sweepstakes, was overjoyed when her dream of

Help send kids and young adults living with neuromuscular disease to MDA Summer Camp! Your donation to MDA’s Summer Retail campaign makes summer camp possible. Find a participating retailer near you or donate online today: https://bit.ly/SummerRetail2024