At any given time, thousands of American families experience the hardship of muscular dystrophy, ALS, and other forms of neuromuscular disease. Severe, life-changing symptoms, including decreased physical ability, and the loss of independence, are a reality for many patients; just as real, however, is hope. Thanks to the unyielding dedication of the Muscular Dystrophy Association (MDA), care and support are more accessible–and more effective–than ever before.
The MDA is an organization dedicated to liberating the world from the debilitating effects of disease. Founded in 1950 by New York business leader and muscular dystrophy patient Paul Cohen, the MDA began as a gathering of passionate people, each with a personal connection to neuromuscular illness. They knew well the effects of muscular dystrophy on individuals and their families, and so they formed the MDA with the goal of advancing research into cutting edge treatments.
The founding members of the MDA saw the value in spreading awareness. They realized that celebrities had the ear of the public, and recruited A-list stars to notify America of the need for better care. Over the years, the value and integrity of the MDA’s mission has been recognized by thousands of the biggest names in entertainment, not the least of which include Frank Sinatra, Oprah Winfrey, Jerry Seinfeld, The Jackson Five, Robin Williams, KISS and Mariah Carey.
For decades, the MDA’s flagship endeavor was an annual “Labor Day Telethon” hosted by Jerry Lewis. Celebrity guests wielded their legendary charisma in a 21-hour long marathon, which quickly became known–and widely viewed–for its special allure. Today, the MDA telethon is remembered as the most successful fundraising event in television history, raising over $2 billion until it’s retirement in 2015.
The legacy of the MDA’s telethon thrives on in the accomplishment of its goal. The MDA currently supports over 180 research projects worldwide on over 40 neuromuscular conditions. In 2017, the organization awarded a total of $18.2 million in research grants. Over the years, the MDA’s support has contributed to countless breakthroughs in deciphering the genetic causes underlying neuromuscular disorders. Just a few of these include the development of a lifesaving therapy for Pompe disease, and creating treatments enabling males with Duchenne muscular dystrophy–a disease which once killed boys in their teens–to live well into their 40s and beyond.
The MDA’s efforts aren’t limited purely to research. With a focus on early diagnosis, specialized care, and access to promising clinical trials, the MDA works to facilitate the ideal outcome for patients and loved ones. Much of that treatment takes place within the MDA’s 150 Care Centers, located in top hospitals throughout the US and Puerto Rico. To seamlessly coordinate treatment, the Care Centers house a range of healthcare professionals to offer comprehensive information, consultation and care all within the same day. In 2016, the organization provided care and support to over 100,000 patients.
The MDA’s relentless pursuit of quality care has helped countless patients regain control of their lives. The fight, however, is far from won, and the MDA hopes to one day offer not only treatment, but a cure for all forms of neuromuscular disease. Anyone looking to support the MDA’s mission can donate here.