#MDA families recently spoke with Bloomberg News's Gerry Smith about Sarepta Therapeutics' Elevidys, a #GeneTherapy for #Duchenne #MuscularDystrophy with recently expanded approval by the FDA. Jyoti Bharadwaj shared how the therapy could significantly improve the quality of life for her 15-year-old son, Ayan, by making everyday activities easier. Jessica Hubbard, Manager, Community Education at Muscular Dystrophy Association, also expressed relief for her son Deacon, who now qualifies for the therapy thanks to the recent expanded approval. While concerns exist about the medication's efficacy and potential drawbacks, the hope it brings to families like the Bharadwajs and Hubbards is invaluable. Read the full article here: https://lnkd.in/e9hiyuTd For those seeking more information and support, visit our Gene Therapy Support Network: https://lnkd.in/ebMANYhm
Muscular Dystrophy Association
Non-profit Organizations
Chicago, Illinois 23,770 followers
Faster breakthroughs, Stronger futures.
About us
If you’re seeking to start or advance your career with a purpose, Muscular Dystrophy Association is an employer that will enable you to thrive. The Muscular Dystrophy Association is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. Our mission is to empower the people we serve to live longer, more independent lives. #MDA #MuscularDystrophy #ALS #neuromuscuar. Apply now.
- Website
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http://www.mda.org
External link for Muscular Dystrophy Association
- Industry
- Non-profit Organizations
- Company size
- 51-200 employees
- Headquarters
- Chicago, Illinois
- Type
- Nonprofit
- Founded
- 1950
- Specialties
- health, healthcare services, ALS research, care, advocacy, muscular dystrophy research, care, advocacy, disability inclusion advocacy, MDA Summer Camp, MDA Care Center Network, MDA Advocacy, Neuromuscular diseases, research, care, advocacy, and community and professional medical education
Locations
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Primary
1016 W Jackson Blvd
1073
Chicago, Illinois 60607, US
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Employees at Muscular Dystrophy Association
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Ankur Ghia
Senior Partner - Global Leader in Digital Transformations and Cloud Strategy
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Autumn Hume
National Account Director, Healthcare Partnerships at Muscular Dystrophy Association
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Marshall ("Mark") Smith, NACD.DC
Senior Executive Leader | Operations | Board Governance | Corporate Finance | Strategic Planning | M&A | IPO | Restructuring | Turnaround
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Pamela Norfleet
Accounts Payable/Account Receivables Manager at Bank Administration Institute
Updates
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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. Led by MDA's Mindy Henderson, VP, Disability Outreach & Empowerment, and Quest Media's #EditorInChief, with Rebecca Hume and Holli Woods, MPA, we invite you to check out our Quest magazine, podcast, blog, and newsletter by subscribing for free today: https://lnkd.in/eFNHRRAj #MDA #QuestMedia #DisabilityPrideMonth
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Sam Osborn said, “There is no try, there is only do.” He lived with congenital muscular dystrophy and built a loving community during his lifetime that carries on his memory today with the mantra ‘live a great story.’ Our community is coming together to honor his positive outlook, and his dedication to putting others first. Join us to celebrate his life and legacy September 20 and 21 at Tiburon Golf Club in Omaha, Nebraska, and support MDA’s mission to accelerate research and advance care. Sam Osborn Memorial Golf Tournament - Register today here: https://lnkd.in/ghDca2a4 Thank you to our presenting sponsor Proceed Finance. #Golf #CongenitalMuscularDystrophy #MuscularDystrophy #Neuromuscular
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Researcher Bjarne Udd, MD, PhD, provides a deeper understanding and details the latest developments in disorders related to the Titin (TTN) gene. Learn more in this Q&A from our #QuestMagazine: https://lnkd.in/eHxkCXPb
Understanding Titinopathies - Quest | Muscular Dystrophy Association
https://mdaquest.org
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Join us on Thursday, July 18 from 7-8pm ET for the MDA Advocacy Institute: Finishing 2024 Strong - Top Legislative Priorities. Learn about eliminating SSI savings penalty, urging treatments for pediatric rare disease, and helping kids access health care. These legislative priorities are vital for improving access to care and support for children with rare neuromuscular diseases, and your voice is crucial in pushing them forward. Registration is free here: https://lnkd.in/eUFnKH6p
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Join American Society of Gene & Cell Therapy and the Muscular Dystrophy Association in Chicago November 19-20, 2024, for an unparalleled opportunity to explore the latest advancements in research on #GeneticTherapies for #MuscularDystrophy. This inaugural meeting will bring together leading researchers and clinicians from the #neuromuscular disease community to discuss cutting-edge genetic therapies and technologies. Have research to share? Submit your muscular dystrophy related abstracts through August 9 at 11:59 p.m. ET for the opportunity to present your research in-person in Chicago. Register or learn more here: https://lnkd.in/efS_XEW9 #ScientificResearch #ClinicalResearch #Research
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Happy #IndependenceDay! MDA’s #AccessTheVote campaign aims to ensure voting is accessible for everyone. Let's celebrate our freedom and make our voices heard. 🔹 Register to Vote 🔹 Know Your Rights 🔹 Find Accessible Resources Visit MDA.org/Vote to learn more. #FourthOfJuly #DisabilityInclusion
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As #IndependenceDay approaches, we celebrate the spirit of independence and the power of freedom. At #MDA, we are committed to empowering families living with #neuromuscular diseases to achieve their own independence through our comprehensive programming, resources, and #advocacy. 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. Visit MDA.org/Vote to learn more and #AccessTheVote.
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As we gear up for Independence Day, let's celebrate the incredible stories of individuals with disabilities living independently, including Muscular Dystrophy Association National Ambassador Ira Walker. We offer practical tips on home safety, cooking, and more, showcasing true resilience and adaptability. Read more in our Quest blog. #DisabilityPrideMonth #IndependenceDay #FourthOfJuly #QuestBlog
Living Independently with a Disability - Quest | Muscular Dystrophy Association
https://mdaquest.org
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Thank you to Muscular Dystrophy Association volunteers Jayme and Rhys Hoskins and the Milwaukee Brewers for inviting MDA families to come together on the field last Friday night! There is so much strength in our community and the support for one another is always home run! Join MDA ➡ https://lnkd.in/eyRvAgEc 💙 💛 ⚾
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