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ADVOCATES TAKE ACTION: The Accelerating Kids' Access to Care Act aims to streamline the process for children and families to access out-of-state care through state Medicaid programs, including neuromuscular care. Ensuring access to the best treatments without unnecessary delays and red tape is critical. Tell Congress to move this bill forward and take action with MDA here: https://www.votervoice.net/MDA/Campaigns/117108/Respond

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.

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

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

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

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.

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.

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...

Sunny Brous embodies the power of positive action in the face of adversity. After Sunny was diagnosed with ALS at the young age of 27, she chose to engage, educate, and empower others about ALS. Through her candid blog posts and public speaking, Sunny offers insight into the daily challenges and realities of living with ALS. Her ability to connect, inspire, and mobilize community support makes her a well-respected voice in the ALS community. We thank you Sunny, for being a warrior in this fight against ALS!

Stay up-to-date on newborn screening progress for Duchenne muscular dystrophy (DMD) and hear from experts Paul Melmeyer, MDA, Lauren Stanford, Parent Project Muscular Dystrophy, Annie Kennedy, EveryLife Foundation for Rare Diseases, and Jill Anne Castle, M.Ed, Little Hercules Foundation. Now available on-demand. Watch here: https://www.youtube.com/watch?v=UJL1d4EtWjw

Ambassador Guest Blog: The Joy of Motherhood - Quest | Muscular Dystrophy Association Every woman's journey to motherhood is beautiful and unique and can be full of adventure and challenges! Our ambassador shares her story!