November is National Family Caregivers Month!

About Us

Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.

Muscular Dystrophy Association's COVID-19 Emergency Fund Launches Extensive Campaign in ALS Awareness Month to Raise Funds for the Most Vulnerable During the Pandemic

NEW YORK, April 29, 2020 /PRNewswire/ --

The Muscular Dystrophy Association (MDA) today launched a critical awareness and emergency fundraising campaign throughout the month of May for ALS Awareness Month, with a focus on the importance of the specialized care for families living with amyotrophic lateral sclerosis (ALS). The fund will continue through the COVID-19 pandemic in support of the more than 43 neuromuscular diseases covered by MDA.

"People living with ALS and related neuromuscular diseases are the most high-risk population, especially during this pandemic since these diseases cause breathing to be severely compromised," said Lynn O'Connor Vos, President and CEO of MDA. "The support that MDA brings through our funding of worldwide research, clinical trials and medical teams at MDA Care Centers is critical to finding cures. Our advocacy efforts, and other specialized services and resources reach as many as 30,000 people diagnosed with ALS and more than 250,000 with related neuromuscular diseases in the United States."

Driving ALS Care and Research for 70 Years 
MDA supports more than 150 MDA Care Centers at top medical institutions across the United States and Puerto Rico. MDA's impact has led the way for innovations in ALS and related neuromuscular diseases — funding research across the drug development spectrum.

Delivering Guidance During a Challenging Time 
MDA released an on-demand webinar on how to deal with the uncertainty that COVID-19 brings. The webinar features best practices for staying connected during a time of social distancing, with a focus on individuals with ALS and their caregiver's mental health management.  This webinar is led by Dr. Ambereen Mehta and Hillary Zebberman, MSW, LCSW, from UCLA Medical Center and is available here.  

MDA is hosting a special Facebook Live with Dr. Matthew Harms, a member of MDA's Medical Advisory Team and Associate Professor of Neurology at Columbia University Irving Medical Center, to discuss the best practices needed to protect the ALS community during the COVID-19 pandemic. The live Q&A event, open to a global ALS audience, is slated for May 1 at 3 p.m. ET.  Kristen Stephenson, Executive Vice President, Chief Advocacy & Care Services Officer for MDA will facilitate.

As the need for telehealth grows, families living with neuromuscular diseases have a need for education around this type of visit. This live webinar will outline what a virtual medical visit is, what families can expect and how to prepare for the visit. Questions will be taken during the webinar, taking place on May 15 at 7:30 p.m. ET. Register and learn more here.  

MDA COVID-19 Emergency Fund Virtual Gala Weekend

To continue to raise critical emergency funds, MDA is introducing a weekend filled with nonstop virtual programming in support of the organization's mission. The weekend combines hundreds of high-profile fundraisers that were cancelled and moved to virtual format due to COVID-19.

The festivities kick off with a virtual gala on May 1 at 7 p.m. Livestream the program at youtube.com/MDA. One-of-a-kind auction items are available for bidding now through #GivingTuesdayNow on May 5 here.

The fundraising effort will continue with MDA's Make Your Move Weekend (May 1 at 5 p.m. – May 2 at 5 p.m.), a 24-hour event that encourages people to host DIY fundraising opportunities. Over the span of the weekend, MDA will livestream movement programming including accessible yoga, running and other workouts featuring special guests. Register and learn more here.  

Dutch Bros Coffee "Drink One for Dane" Goes Online

Dutch Bros Coffee returns for its 14th annual Drink One for Dane fundraiser to celebrate the life of co-founder Dane Boersma, who died of ALS in 2009. Taking place all day on May 8, the fundraiser will center on a special online sale and donation platform, to promote social distancing. Specially made Drink One for Dane mug and sticker packages will be available at dutchbros.com/endals (website live May 1) with proceeds benefitting MDA.

About MDA

For 70 years, the Muscular Dystrophy Association (MDA) has been committed to transforming the lives of people living with 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 life-changing therapies across multiple neuromuscular diseases. MDA's MOVR is the first and only data hub that aggregates clinical, genetic, and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development. MDA supports the largest network of multidisciplinary clinics providing best in class care at more than 150 of the nation's top medical institutions. Our Resource Center serves the community with one-on-one specialized support, and we offer educational conferences, events, and materials for families and healthcare providers. Each year thousands of children and young adults learn vital life skills and gain independence at summer camp, at no cost to families, with virtual programming coming for summer 2020. During the COVID-19 pandemic, MDA continues to produce virtual events and programming to support our community when in-person events and activities are not possible. MDA's COVID-19 guidelines and virtual events are posted at mda.org/COVID19. For more information, visit mda.org.

SOURCE: Muscular Dystrophy Association

Find MDA
in your Community