[15] In 1996, MDA and Lewis were jointly honored by the American Medical Association with a lifetime achievement awards for their contributions to the health and welfare of humanity.

[20] In November 2020, MDA launched a tool, called the neuroMuscular ObserVational Research (MOVR) Visualization and Reporting Platform (VRP), to help make clinical data more accessible and accelerate the discovery of muscular dystrophy treatments.

[24] Throughout stay at home orders due to the COVID-19 pandemic, MDA shared a "joke of the day" from National Ambassador Ethan Lybrand via their social media channels.

In a recent [interview](https://denver-frederick.com/2024/01/12/the-muscular-dystrophy-association-reimagined-a-chat-with-mdas-dr-donald-wood/) with Denver Frederick, Dr. Donald Wood, the current CEO of MDA, discussed the organization's founding legacy and its evolving role in reimagining support and research for the muscular dystrophy community.

[45] Since the program's inception in 1952, over 45 National Ambassadors have shared their experiences to emphasize the need for funding research and developing treatments and cures for neuromuscular diseases.

Former youth ambassadors have pursued diverse fields in adulthood, advocating for improvements in accessibility, early intervention treatments through newborn screening, and advancements in research and care for MDA families and individuals living with disabilities.

[49] Another notable ambassador is Ethan LyBrand, who has Duchenne muscular dystrophy and gained national recognition for his Shorty Award-winning "Joke-A-Day for MDA" campaign during the COVID-19 pandemic.

[52] In 2007, MDA funded Adrian R. Krainer and his colleagues at the Cold Spring Harbor Laboratory in Laurel Hollow, New York for the early-stage development of nusinersen.

The Kickstart Program was presented at the 2023 MDA Clinical & Scientific Conference, where discussions focused on opportunities to de-risk gene therapies, current barriers to development, collaborative frameworks, and data management.

[3] MDA supported the FDA's decision in 2023 to approve an experimental gene therapy developed by Sarepta Therapeutics that aims to slow the progression of Duchenne muscular dystrophy by facilitating the production of a protein called micro-dystrophin in patients' muscles.

These events help support research, care, and advocacy for families affected by muscular dystrophy, ALS, and related neuromuscular diseases in the United States.

Firefighters across the country have raised $690 million over nearly seven decades, leading to breakthroughs in research, FDA-approved treatments, and advocacy efforts such as access to care and newborn screening.

[58] MDA's annual payments to IAFF, which ranged from $980,000 to $1.4 million between 2015 and 2020 according to U.S. Department of Labor filings, received some scrutiny for their size relative to the charity's expenditures.

[62] However, in 2016, one year before his death, Lewis broke a five-year silence in a video endorsing MDA's redesigned web site and brand, declaring that the work to end muscular dystrophy be continued.

[68] Following the Kevin Hart Kids Telethon was MDA's 70th Anniversary Show, hosted by entertainment TV journalists Nancy O'Dell and Jann Carl.

[67] The MDA Clinical & Scientific Conference is a prominent event that gathers over 2,000 professionals, including scientists and clinicians, specializing in neuromuscular diseases.

The 2023 conference featured a keynote address by Dr. Peter Marks, director of the FDA's Center for Biologics Evaluation and Research, on the growing impact of gene therapies in treating rare disorders.

Besides focusing on science and research, Quest's coverage includes adaptive lifestyles, travel, medical equipment, accessible fashion, employment, and media representation.

MDA Summer Camp offers children and young adults the opportunity to participate in recreational activities that foster independence, self-confidence, skill development, and friendships.

[73] Started in 2010, the MDA Muscle Walk is an annual 1 to 3.1-mile lap event held in over 150 communities across the United States to raise money for research and patient services.

Customers can write their names on paper shamrocks, which are then displayed in stores to show support for MDA's mission to empower people with neuromuscular diseases to lead longer, more independent lives.

1281; 113th Congress), a bill that would amend the Public Health Service Act to reauthorize grant programs and other initiatives to promote expanded screening of newborns and children for heritable disorders.

As of the year ending December 31, 2022, MDA reported significant funding directed towards patient and community services, professional public health education, and research.

The organization's financial activities, leadership compensation, and fundraising methods are transparently disclosed, emphasizing their commitment to accountability and ethical practices.