We celebrate Disability Pride Month in July and all year round with empowering stories and resources in Muscular Dystrophy Association’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.
We’re thrilled to announce that MDA has earned the prestigious Platinum Seal of Transparency from Candid! This recognition is a testament to our unwavering commitment to openness and accountability in all aspects of our nonprofit business, and in our financial management and reporting, in particular. This designation, like our Better Business Bureau accreditation, amplifies the respect we carry for every dollar we raise from our community and funding partners. It certifies that we have met rigorous independent standards for stewarding charitable contributions and budget management. Every day, we channel your support into innovative research, groundbreaking treatments, comprehensive care, recreation and educational programming, and resource support. Our mission is not just about prolonging life but enhancing its quality. With each breakthrough, we move closer to a world where neuromuscular diseases no longer define the lives of those we serve. Transparency is at the heart of everything we do because we believe that you, our incredible community of supporters, deserve to see the impact of your contributions. For 74 years, Muscular Dystrophy Association has been at the forefront of the fight against #neuromuscular diseases. We propel research forward and bring hope and tangible improvements to the lives of people living with neuromuscular disease and their loved ones. From pioneering research initiatives that push the boundaries of science to advocating for policies
Yesterday, a milestone was achieved as the U.S. FDA granted expanded approval for Sarepta Therapeutics' Elevidys - the first gene therapy to treat #Duchenne #MuscularDystrophy (#DMD). Read more here: https://lnkd.in/eccAYHt3 #MDA has been a pioneering force in #GeneTherapy from the very beginning, establishing the Task Force on Genetics in the 1980s which led to the discovery of the gene causing Duchenne muscular dystrophy and marked a significant breakthrough in both #MuscularDystrophy and genetic research. From that time, recognizing the potential of gene therapy to address many of the diseases in its program, MDA has since invested over $125M in the development of gene therapy. Today, our mission to accelerate the development of treatments and cures for #neuromuscular diseases remains steadfast. Join us in celebrating this incredible progress and hear from MDA leaders, families, and care center directors about the strides we've made and the exciting future ahead. For guidance and support on novel gene therapy treatments, including ELEVIDYS, visit the MDA Gene Therapy Support Network (GTxSN): https://lnkd.in/ebMANYhm
VOLUNTEER OPPORTUNITY: We still need more volunteers for MDA Summer Camp! #MDA #SummerCamp wouldn't be possible without the hundreds of #volunteers who serve as #counselors and medical team volunteers to help make it a safe, fun, and memorable experience. Apply now to make a difference for kids living with #MuscularDystrophy and related #neuromuscular diseases. Apply now to make a difference for kids living with muscular dystrophy and related neuromuscular diseases: https://lnkd.in/dACrVwnN
Last night we honored Brooke Eby, Fern Cohen, Joann Wright on behalf of the late Victor Wright, Dr. Toby Ferguson, Stephanie Melillo Fradette PharmD, and Scott Sabatino for Price Chopper Supermarkets-Market 32 at Muscular Dystrophy Association’s Wings Over Wall Street. The event grossed over $350,000 for #ALS research. Since 2001, #WingsOverWallStreet led by co-founders Warren Schiffer, LCSW and Larry Schiffer has raised over $13 million to fund research to #EndALS. Join us and donate to hashtag #EndALSwithMDA here: https://lnkd.in/ezgfdfbs We're grateful for the support of the MDA Board of Directors attending including Chairman Governor Brad Henry, Anjan Aralihalli, Christopher Rosa, PhD, Hon. Robert Pipia, Stephen Furnary. Thank you to the MDA Wings Over Wall Street Committee members for making this such a success: Warren J. Schiffer, Co-founder of MDA’s Wings Over Wall Street, with Wings Over Wall Street Committee members Anjan Aralihalli, Jim Condron, Praneetha Desu, Brandon Hanna, Lauren Horak, Danielle Jaycox, Morgan Jaycox, Susan Jaycox, Grace Oakley, Jamie Schiffer, Larry P. Schiffer, Neil Shneider, Kimberly Unger, Lisa Marie Utasi, Jenna Walsh. Thank you to our sponsors CITGO Petroleum Corporation, IEX, Mitsubishi Tanabe Pharma America, Victor R. Wright Foundation, Biogen, Cboe Global Markets, USI Insurance Services, Voyager Therapeutics, Inc., Aegis. Photos by Wenlan Zheng.
As we observe the 50th anniversary of National #EMSweek, #MDA recognizes the critical role emergency medical services professionals play in our community, particularly for people living with #neuromuscular diseases. This #ALSawarenessMonth, join us in commemorating 70 years of partnership with the International Association of Fire Fighters (IAFF) as we #FillTheBoot to fund crucial #ALS research. Dallas Fire Fighters Association IAFF Local 58 Lt. Carson Hyles, whose former colleague Ken Sutcliffe is living with ALS, shares his insights into why supporting this campaign is so impactful. Fill the Boot today at MDA.org/FillTheBoot #EndALSwithMDA
Stay up-to-date on #NewbornScreening progress for #Duchenne hashtag#MuscularDystrophy (#DMD) and hear from experts Paul Melmeyer, Muscular Dystrophy Association, 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://lnkd.in/e3nMtnUP
When MDA was founded in 1950, we found an early and passionate advocate in Eleanor Gehrig. Widowed by ALS a decade earlier, Eleanor sought to make a difference in the fight against the disease that claimed her husband, Lou, a baseball legend. Her involvement with Muscular Dystrophy Association helped shape our focus on #ALS research and support, creating a legacy that continues to this day. Help continue the Gehrig legacy this ALS Awareness Month at MDA.org/EndALS #ALSawarenessMonth #EndALSwithMDA
Happy #NationalDNAday! Learn how #MDA has used #DNA to further neuromuscular disease research from MDA President & CEO, Donald S. Wood, PhD. Read more about our commitment to breakthroughs in research at MDA.org/science
We are so proud of Muscular Dystrophy Association’s Team Momentum staff and participants for completing the incredible challenge of the Boston Athletic Association's hashtag#BostonMarathon! Congratulations Bill, Tim, Anna, Jesse, and Derrick, for raising awareness, and over $60,000 for our mission! Together we are accelerating research, advancing care, and advocating for access for the neuromuscular community! Thank you to everyone who donated and cheered them on. We are grateful for your dedication and commitment! 💙 💛 🎉 Thank you to our partners at CITGO Petroleum Corporation for#FuelingGood! Learn more and join MDA’s Team Momentum for the next #marathon here: https://lnkd.in/gKej2AEg
