The Muscular Dystrophy Association (MDA) is launching “MDA National Muscular Dystrophy Awareness Month,” as part of an extensive campaign to raise awareness around the organization’s advancements in neuromuscular disease research, treatment and care.
| NEW YORK, Sept. 3, 2019 /PRNewswire/ -- The Muscular Dystrophy Association (MDA) is launching “MDA National Muscular Dystrophy Awareness Month,” as part of an extensive campaign to raise awareness around the organization’s advancements in neuromuscular disease research, treatment and care.
MDA has funded more than $1 billion in research, with 224 grants funded last year alone, bringing new treatments and cures closer than ever. Six neuromuscular disease treatments based on MDA-funded research have been approved by the FDA thus far. Our Gene Catalyst Initiative focuses on understanding the genetic and molecular origins of neuromuscular disease to advance genetic diagnoses and support the development of disease therapies that target the underlying cause of the disease. Our MOVR (neuroMuscular ObserVational Research) Data Hub will provide a robust repository of real-world information that will be available to a broad community of healthcare providers, researchers and industry partners in order to improve health outcomes as well as clinical trial design and recruitment. “Neuromuscular diseases can take away an individual’s ability to move, eat and even breathe but nothing can take away their sheer will to succeed and pursue their dreams,” said MDA President and CEO, Lynn O’Connor Vos. “Since the days of MDA’s renowned annual Labor Day telethon, September has been one of our most important fundraising periods to help us continue our mission of transforming the lives of people affected by muscular dystrophy, ALS, and related neuromuscular disease. We have made tremendous progress in just the last few years, but we need the public’s continued support if we are to accelerate the momentum to find cures.” It is thanks to generous supporters of these critical fundraising campaigns that MDA has been able to lead the way in innovations in neuromuscular disease science and care for nearly 70 years, supporting more than 150 MDA Care Centers at leading medical institutions across the United States and Puerto Rico, which offer best-in-class, highly specialized and individualized care as well as access to innovative clinical trials, and funding life-changing research. MDA also supports community programming with MDA Engage events and local Muscle Walks and benefits, and over 50 summer camps across the country. MDA Summer Camps provide an opportunity for children living with neuromuscular diseases the chance to learn vital life skills and gain life-long friendships, at no cost to their families. #30DaysofStrength Supports MDA Families Year-Round To honor this unprecedented time in neuromuscular research and care, MDA launched #30DaysofStrength, a fundraising campaign to support critical programs for MDA families year-round. As part of the #30DaysofStrength campaign, MDA is encouraging people to start their own online fundraiser. Participants can pledge their support by creating their own physical challenge and pushing their limits to meet a personal goal, with their own “I Will” statement and a brief description to share with friends on social channels. Share Your Story of Power by Saying “I Will” In addition, the organization is featuring the “I Will” series to drive social conversation by highlighting stories around the incredible “power of will” of those living with neuromuscular disease and their will to succeed and beat the odds, despite physical setbacks. MDA will highlight a new story every day on their social media channels (Facebook, Instagram and Twitter) to showcase their mission of transforming the lives of people affected by neuromuscular disease. Members of the MDA community, including Faith Fortenberry, Reagan Imhoff and Devin Argall will also share their stories demonstrating their unfailing power or will to preserve and push the limits. Rhys Hoskins, first baseman for the Philadelphia Phillies and longtime MDA advocate kicked off the campaign with his own “I Will” video to help generate awareness and donations. “I’ve supported the MDA for a longtime now and am thrilled to be able to continue to raise awareness for this incredible organization as part of #30DaysofStrength,” said Hoskins. “I encourage my fans and friends of the MDA community to join me and participate in the “I Will” challenge to help raise funds for neuromuscular disease.” People who would like to support MDA can donate here. About the Muscular Dystrophy Association MDA is committed to transforming the lives of people affected by muscular dystrophy, ALS, and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to approved, life-changing therapies across multiple neuromuscular diseases. We support the largest network of multidisciplinary clinics providing world-class care at more than 150 of the nation’s top medical institutions, and each year thousands of children and young adults learn vital life skills and gain independence at MDA Summer Camp and through recreational programs. For more information visit mda.org.
SOURCE Muscular Dystrophy Association |
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