MDA South TX

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.

We celebrate Disability Pride Month in July and all year round with empowering stories and resources on MDA’s Quest Media platform. An innovative adaptive lifestyle space where 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.

Led by MDA's Mindy Henderson, VP, Disability Outreach & Empowerment, we invite you to check out our Quest magazine, podcast, blog, and newsletter by subscribing for free today: https://www.mda.org/quest/subscribe

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

Your donation can give kids and young adults with neuromuscular disease a life-changing summer at MDA Summer Camp! Make a difference today by donating online or visiting a participating retailer: https://bit.ly/SummerRetail2024

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

In honor of Myasthenia Gravis Awareness Month, join us on June 11 and 12 from 4:30-7:00pm ET for our MDA Virtual Learning Series: Myasthenia Gravis featuring presentations from Srikanth Muppidi, MD, Stanford Medicine, Claire Spahn, PharmD, Stanford Medicine, Jeffrey Rosenfeld, PhD., MD, FAAN, Loma Linda University Health, and Leslie Delfiner, MD, Montefiore Health System.

This event will provide updates on advancements in research, care, and support for those living with MG and their caregivers. It will offer valuable information and resources to help navigate daily life and care decisions. Participants can learn from expert clinicians and members of the MG community through a Q&A. Register for FREE here: https://www.mda.org/care/community-ed/virtual-learning-programs/2024/mda-learning-series-mg


Thank you to our sponsors at Alexion Pharmaceuticals, argenxglobal, Genentech, and UCB Biopharma.

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

During the holiday season, all of us at MDA are reminded of the bright lights in our community–you. Your support illuminates the path of progress in research, advocacy, and access to care for people living with neuromuscular disease. Thanks to you, this year has been filled with breakthroughs, hope, and resilience. Let’s continue this powerful momentum: MDA.org/HOLIDAY

Celebration and Gratitude for the Year of the Volunteer - Quest | Muscular Dystrophy Association As 2023, MDA's Year of the Volunteer, draws to a close, we look back on the many opportunities that we have had to recognize, appreciate, and celebrate MDA volunteers.