MDA Monroe

Understanding Myositis - Quest | Muscular Dystrophy Association Neuromuscular neurologist, Tahseen Mozaffar, MD, provides insight on understanding the complexities of the disease, Myositis.

🎉 Big win! The House of Representatives passed Accelerating Kids’ Access to Care Act (AKAC), bringing us closer to ensuring kids living with neuromuscular diseases get faster access to life-saving treatments, no matter where they live. Huge thanks to MDA advocates and our congressional champions for your support! Join us to continue to advocate for access for our community at MDA.org/Advocacy

MDA Ambassador Guest Blog: Increasing Representation of Disabilities in Children’s Literature is My Life’s Goal - Quest | Muscular Dystrophy Association Books and the stories they contain have the power to connect communities and help children learn and grow values and empathy which is why representation is important. Our Ambassador shares his story!

Thinking about college? Join MDA on Sept. 18 and 26 at 3pm ET for the Planning for College Learning Series. Get organized with tools for preparation, support at college, and finding, hiring, and training personal care attendants. The presenters of this series are Annie Tulkin from Accessible College and Adrienne Frumberg Lighthouse Guidance. This program is free for the neuromuscular community and registration is open now here: https://mdausa.webex.com/webappng/sites/mdausa/webinar/webinarSeries/register/d96f11c4fb9a4cd2825ba8025d5c85cd

Special thanks to our sponsor Edgewise Therapeutics.

September is National Preparedness Month. Check out our MDA Virtual Learning Preparing for Emergencies session with Roger Lopez, MDA- International Association of Fire Fighters National Coordinator, retired Captain & Safety Officer San Antonio Fire Department, and Derek Pollnow, MDA State Coordinator, Federated Fire Fighters of Wyoming and Engineer/Paramedic & Wildland Coordinator, Cheyenne Fire & Rescue. This webinar addresses preparing for the unexpected and will help attendees understand potential risks in their geographical area and the different types of emergencies they might encounter, how to make an emergency plan, and how to build an emergency kit. Watch on-demand here: https://www.youtube.com/watch?app=desktop&v=OI0x41Mm3-0

On this day of remembrance, MDA pays tribute to the bravery and sacrifice of the hundreds of New York City Fire Department (FDNY) fire fighters and International Association of Fire Fighters members lost to 9/11. Their courage will forever inspire us. We stand in solidarity with all families impacted by 9/11, united in the belief that together, we are stronger.

This Muscular Dystrophy Awareness Month, feel empowered to make an impact. We have 30 amazing ideas for you to support people living with neuromuscular disease. Pick one (or more!) and make a difference today. 🌟

Explore the list here: MDA.org/30Ways30Days

MDA Kicks Off Muscular Dystrophy Awareness Month in September with ‘30 Days of Strength’ Campaign with Hundreds of Events to Advance Research and Care for the Neuromuscular Disease Community | Muscular Dystrophy Association Over 420 IAFF ‘Fill the Boot’ events nationwide with local fire departments over Labor Day Weekend celebrating 70 years of partnership with MDA and IAFF NBC KSDK’s ‘Show of Strength’ Broadcast on September 1 live from Grants Farm in St. Louis from 8-10 p.m. MDA on the Hill from September 8...

📝 August is Make A Will Month! Your estate planning today can secure a better tomorrow for people living with neuromuscular diseases. By including MDA in your will, you can help continue this incredible work, funding research, care, and advocacy efforts that change lives.

Visit MDA's Planned Giving Page to learn how your legacy can make a lasting impact. Together, we can ensure that the fight against muscular dystrophy, ALS and related neuromuscular diseases carries on for generations to come. Get started here: https://mdalegacy.org/

Join us on August 29, September 5, and September 12 for this in-depth learning series all about advancements and considerations in gene therapy across neuromuscular diseases. This multi-day series is free for people living with neuromuscular disease and their caregivers.

Presentations from experts in the field include: Craig Zaidman, MD and Natalie Goedecker CPNP, WashU Medicine, Barry J. Byrne, MD, PhD UF Health, Michael Storey, PharmD from Nationwide Children's Hospital, Paul Melmeyer, VP of Public Policy and Advocacy at MDA, and Aravindhan Veerapandiyan, MD from Arkansas Children's.

Each presentation will also offer a live Q&A. Register today! https://mdausa.webex.com/webappng/sites/mdausa/webinar/webinarSeries/register/4bfad64d0f6a4cc0b8d71beb80d124d4

Muscular Dystrophy Association Unveils Fall Issue of Quest Magazine and Quest Holiday Product Guide | Muscular Dystrophy Association Quest Holiday Product Guide features eight MDA Ambassadors from across the country with products that enhance independence for the disability community. NEW YORK – Wednesday, August 21, 2024 – The Muscular Dystrophy Association's (MDA) Quest Media, an innovative adaptive lifestyle platform inclu...

In recognition of SMA Awareness Month, MDA is hosting a Q&A this Thursday, August 22 at 4pm ET with expert clinicians including Anne Connolly, MD from Nationwide Children's Hospital, Jason Howard, MD from Nemours, and Kara Arps, PT from Monroe Carell Jr. Children's Hospital at Vanderbilt. Write down your questions as you watch their on-demand presentations and then get them answered at the live Q&A! Register today here: https://www.mda.org/care/community-ed/mda-virtual-learning/2024/mda-learning-series-sma

Special thanks to our program supporters Biogen, Genentech, and Scholar Rock.

MDA funds scientists around the world to explore new frontiers in neuromuscular disease research. Learn more from Matthew Disney, Ph.D., UF Health, and visit MDA.org/Science for more information.

We are proud to announce the 10 recipients of the inaugural MDA College Scholarship program from across the country! 🎓 Students were selected based on their commitment to community involvement, leadership potential, and personal growth and the scholarship funds will go towards their pursuit of higher education goals. Congratulations scholars! 🎉 Thank you to our sponsors Certina and Numotion Foundation.

Learn more: https://www.mda.org/press-releases/2024/mda-announces-recipients-of-inaugural-mda-college-scholarship-program

Join us Tuesday, August 27 and Wednesday, August 28 from 5 - 8pm on both dates for the MDA Next Steps Seminar for newly diagnosed ALS patients and their families. Topics will include medical care, equipment and home modifications, mental wellness, financial planning, and more. Expert clinicians and members of the ALS community will provide insights, guidance and support in Q&A sessions. Register free today: https://www.mda.org/care/community-ed/next-steps-seminars

Thank you to our webinar supporters, Biogen, Mitsubishi Tanabe Pharma America, Inc., and Reinsurance Group of America, Incorporated.

📝 August is Make A Will Month! As we celebrate the legacy of the Muscular Dystrophy Association and its nearly 75 years of impactful work, let's keep the momentum going for future generations living with neuromuscular diseases. By including MDA in your estate planning, you can make a lasting difference and ensure your legacy can provide hope, support, and resources for families and individuals living with these conditions. Start your estate planning this month and make a will that reflects your values and passion for making a positive impact. Visit MDA's Planned Giving Page to learn more about how you can include MDA in your will.

Together, we can create a brighter future. Get started here: https://mdalegacy.org/

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

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

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