August is SMA Awareness Month

Greetings, here’s your MDA newsletter [Muscular Dystrophy Association]( [MDA Monthly Newsletter] August is SMA Awareness Month [Learn More About SMA ]( August is SMA Awareness Month. All month long we’re shining a light on spinal muscular atrophy (SMA), a neuromuscular disease that impacts thousands of kids and adults every year. Throughout August, we’ll be sharing key facts, stories, and resources about SMA to spread knowledge and awareness. [Learn More About SMA]( --------------------------------------------------------------- Mark Your Calendar! MDA Virtual Learning Series: SMA [Mark Your Calendar! MDA Virtual Learning Series: SMA]( Register today for the upcoming free virtual webinar that will provide up-to-date information on care, research advancements, and support for people living with SMA and their caregivers. Topics include exercise and orthopedic care considerations. [Register Today]( --------------------------------------------------------------- Your Vote is Your Power [MDA Access the Vote]( This election season, make your voice heard and support policies that help people living with neuromuscular diseases live more independent lives. Your vote is your power! Together, we can build a future where everyone has the opportunity to thrive. [Access the Vote]( Neuromuscular disease journeys don't need to be navigated alone — we're here to help! [VIsit the MDA Resource Center]( Join Us for the Premiere of ‘Good Bad Things’ – A Film Like No Other [Join Us for the Premiere of ‘Good Bad Things’ – A Film Like No Other!]( We’re thrilled to announce, "Good Bad Things," a groundbreaking film starring a lead actor living with muscular dystrophy. Premiering August 15 in 50 AMC theatres nationwide. Help us sell out all 50 screens! Each sold-out screen will have a matinee show on August 18. Support this [powerful film]( and celebrate authentic stories. [Purchase Your Ticket]( --------------------------------------------------------------- Share Your Experience with Supplemental Security Income (SSI) [Share Your Experience with Supplemental Security Income (SSI) ]( We’re supporting bipartisan legislation to modernize outdated SSI asset limits – but we need to hear from you! Share your experiences with outdated asset limits, loss or reduction of benefits, limiting work to keep SSI and more. [Share Your Story]( --------------------------------------------------------------- My Gene Therapy Journey: The Bafus Family [My Gene Therapy Journey: The Bafus Family]( The Bafus’s two sons were diagnosed with Duchenne muscular dystrophy (DMD) in May 2023. One month later, the family learned of the recently approved, first-of-its-kind gene therapy treatment for DMD; and they embarked on a journey of research, hard decisions, and ultimately, hope. [Read About the Bafus Family]( Read Quest Magazine. Listen to the Podcast. Follow the Blog. [Subscribe]( Treatments in Duchenne Muscular Dystrophy (DMD): Which is Right for Me? [Treatments in Duchenne Muscular Dystrophy (DMD): Which is Right for Me? ]( With several DMD treatments now available, it can be difficult to know which is right for you or your loved one. Join MDA, Dr. Craig Zaidman, and Dr. Natalie Goedecker from Washington University for part one of our Virtual Learning Series on Gene Therapy for DMD. [Register Today!]( --------------------------------------------------------------- August is Make a Will Month: Include MDA In Your Estate Planning [August is Make a Will Month: Include MDA In Your Estate Planning ]( You can make a lasting difference and ensure your legacy provides hope, support, and resources for the neuromuscular disease community. “I’ve decided to use my will to leave gifts to charities I care deeply about, including MDA. I want to control what happens to my assets, so that’s why I’ve made this decision.” - Domenica (donor) [Create a Brighter Future]( --------------------------------------------------------------- Celebrating Volunteer Longevity [Become a Volunteer ]( Volunteers are essential to MDA's vibrant programs. Every year, we welcome new supporters and celebrate those with decades of dedicated service. Discover how your efforts can become a key part of MDA's legacy. [Become a Volunteer]( --------------------------------------------------------------- Volunteer Spotlight: Meet Marie! [Read About Marie]( Marie has been volunteering with MDA for 47 years, starting as an MDA Summer Camp volunteer at 17. Initially planning to become a teacher, Marie's volunteer experience led her to pursue a career as a registered nurse. "It's incredible how much camp has impacted me. It changed how I view life, raised my children, and shaped my career." [Read About Marie]( --------------------------------------------------------------- ICYMI - [The Squeaky Wheel Podcast - Episode 4: Accessible Air Travel - A Conversation with MDA’s Mark Fisher]( - [Flagstaff Fire Fighters Raise More Than $22,000 For Muscular Dystrophy Association]( - [Steps of Hope: St. Louis Community Unites at MDA Muscle Walk to Fight Neuromuscular Diseases]( - [Annual “All That Jazz” Gala benefiting the Muscular Dystrophy Association raises over $200,000]( - [Duchenne Kids’ Families Pin Hopes on Contentious FDA Decision]( --------------------------------------------------------------- Upcoming MDA Events For all upcoming public events, please visit [mda.org/events](. MDA Community Group: Pediatrics Wednesday, August 21, 2024 | 5 p.m. ET [Register Here]( MDA Community Group: Adults Wednesday, August 21, 2024 | 6 p.m. ET [Register Here]( MDA Community Group: ALS Thursday, August 22, 2024 | 6 p.m. ET [Register Here]( MDA Virtual Learning Series: SMA Thursday, August 22, 2024 | 4 - 5:30 p.m. ET [Register Here]( MDA Next Steps Seminars: Newly Diagnosed ALS August 27-28, 2024 | 5 - 8 p.m. ET [Register Here]( Support Us Monthly For just $19 a month, you can be a champion for kids and adults with neuromuscular diseases. Donate today to support research and programs for people living with neuromuscular disease. [Donate Monthly]( --------------------------------------------------------------- [Facebook]( [Twitter]( [Instagram]( [LinkedIn]( [YouTube]( [MDA.org]( © 2024 Muscular Dystrophy Association, Inc.. 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