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Muscular Dystrophy Association Accelerates Research, Advances Care, and Advocates to End ALS

MDA and the International Association of Fire Fighters (IAFF) release educational initiative to raise awareness and provide resources for fire fighters and their families living with ALS.

NEW YORK, NY -- April 25, 2022 – The Muscular Dystrophy Association (MDA) today announced programming and fundraising events in support of people living with Amyotrophic Lateral Sclerosis (ALS) throughout ALS Awareness Month in May.

MDA and IAFF ALS Educational Initiative

The Muscular Dystrophy Association (MDA) and the International Association of Fire Fighters (IAFF) continue their decades long partnership to share an ALS Educational Initiative to raise awareness and provide resources for fire fighters and their families impacted by ALS. Research shows that fire fighters have a two-fold risk of ALS as compared to the general population. This initiative will provide reliable information and critical resources to support fire fighters and their families such as access to MDA's Care Center network with ongoing clinical trials and treatments, the MDA Resource Center including connections programming for families to find emotional support in their own neighborhoods, and continued Advocacy for appropriations from the ACT for ALS, signed into law in late December 2021. The IAFF, MDA's largest organizational partner has continued the Fill the Boot program for 68 years raising critical funds that have advanced care and treatment for ALS. MDA's ALS Education Initiative for Fire Fighters is supported by Mitsubishi Tanabe Pharma America.

ALS Research and Care

"For over 70 years, MDA has led the way, investing over $173 million in innovations in ALS science and care. Thanks to MDA-funded research, we have made tremendous leaps forward in our understanding of the causes of ALS," said Donald S. Wood, PhD, President and CEO of MDA. "In addition, the ACT for ALS, of which MDA played an integral part, was signed into law in December 2021 and is the largest expansion of government funding for access to investigational therapies. For all these reasons, this is a more hopeful time than ever before for patients and families living with ALS."

See MDA's impact

MDA's commitment to ALS includes support for our network of more than 150 multidisciplinary MDA Care Centers at top medical institutions nationwide, including 48 designated MDA/ALS Care Centers. In addition, our MOVR Data Hub is a state-of-the-art data technology hub, powered by MDA's network of Care Centers, which collect clinical and genetic data for seven neuromuscular diseases including ALS. MOVR serves as a valuable tool for optimizing health outcomes and accelerating therapy development in ALS. With 2,000+ individuals with ALS participating in MOVR, we are gaining meaningful insights that will lead to advances in care and treatments.

"We are, I think, on the verge of a tremendous leap forward in our knowledge of ALS," said Dr. Matthew B. Harms, MDA Medical Consultant, Associate Professor of Neurology, Columbia University, and a leading voice in ALS and neuromuscular disease research and care. "I think one of the exciting things about ALS research is that the field is now converging and telling us about these key pathways that are disrupted in ALS. Once you've identified the key pathways that are leading to the disease, then you can think about therapies to address them. I believe we are going to see tremendous progress over the next few years."

MDA also collaborates with the National ALS Registry, a program of the federal Agency for Toxic Substance and Disease Registry (ATSDR), a sister agency of the CDC, to support the data collection of those living with ALS. Those registered with the National ALS Registry support scientists working to discover factors that cause ALS and contribute to a better understanding of the disease.

ALS Advocacy

ACT for ALS

• MDA was among one of three leading ALS organizations—with I AM ALS and The ALS Association--to advocate for the ACT for ALS legislation, which was signed into law in 2021 (Dec. 23).
• The ACT for ALS was the largest expansion of government funding for expanded access in history. In the signing ceremony, President Biden recognized MDA as a major player in helping get this bill through Congress.
• • ACT for ALS creates a new grant program that funds access to investigational ALS treatments for people living with ALS who cannot participate in clinical trials, while also supporting research on treatment safety and ALS progression.
  • This law invests in neurodegenerative disease research through a brand-new Food and Drug Administration (FDA) Rare Neurodegenerative Disease Grant Program. This program will be critically important to keep the FDA and other federal agencies moving urgently to find treatments and cures that can be approved by the FDA, covered by health insurance and made available to all.
  • Finally, ACT for ALS establishes a Health and Human Services (HHS) Public-Private Partnership for Rare Neurodegenerative Diseases jointly led by the FDA and the National Institutes of Health (NIH), the first federal entity explicitly charged with the responsibility to speed the development and approval of therapies for rare neurodegenerative diseases.
• MDA and its advocates worked hard to secure $30 million in initial funding for the implementation of ACT for ALS

Ongoing Advocacy Efforts

• MDA works every day to ensure that members of the neuromuscular community, including those living with ALS, can learn, work, travel, and socialize without discrimination. We continue to advance policy changes that remove hurdles and barriers, including:
  
  • Improve air travel for individuals with disabilities
  • Ending workplace discrimination against people with disabilities
  • Creating a paid leave program for those with NMD and their families.
  • Fostering economic independence for those with disabilities
• Increasing equitable access to early detection, intervention, and lifelong care of neuromuscular diseases is vital for the NMD community, including those with ALS. MDA's advocacy team continues to fight for:
  • Permanent extension of tax credits that allow people to afford private health insurance
  • Expansion of Medicaid coverage and telehealth services.
  • Improving vital home and community-based care program
• MDA advocacy also extends to the FDA where, in recognition of MDA's leading role in advancing genetic medicine, our team has been invited to participate in helping craft new approaches for moving clinical trials forward in genetic diseases, which number over 7000, affecting millions of Americans.

Upcoming Events

Community Education

• April 26 MDA Engage Webinar: ALS-Parenting at Challenging Times This MDA Engage Webinar will focus on providing guidance to parents who have an ALS diagnosis with an emphasis on how to talk with your children about ALS and how to continue to parent while living with ALS.
• May 4 Fire Fighter Appreciation Day will mark the launch of the MDA/IAFF ALS Education Initiative
• May 17-18 MDA Engage: Amyotrophic Lateral Sclerosis (ALS) Symposium. Topics will include Nutrition and ALS; How to find a Caregiver; ALS Research and Clinical Trials; Physiotherapy.

Advocacy

• May 24 MDA Advocacy Institute at 7pm ET

Fundraising

• May 2: #Take5 Challenge—In honor of people living with ALS and their families, who provide tireless support and ongoing care every day, MDA is launching the Take 5 Challenge to help raise awareness and funds for life-changing ALS research, care and advocacy. The challenge will be shared on: Instagram, TikTok, Facebook, and Twitch.

• May 6: MDA ALS Golf Classic, Arizona Biltmore, Phoenix, AZ
• May 19 & 20 - Belotti Golf & Gala – Eugene Country Club, Eugene, OR
• May 20: Drink One for Dane --On Friday, May 20 Dutch Bros Coffee will mark its 16th annual Drink One for Dane day by donating a portion of proceeds from its more than 550 shops to the Muscular Dystrophy Association (MDA).

ALS events continue year-round including

• June 2 Lou Gehrig Day - MDA will participate and represent at MLB home games across the country
• June 9 Wings Over Wall Street Gala in NYC

About Muscular Dystrophy Association

Muscular Dystrophy Association (MDA) 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. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, Twitter, TikTok, and LinkedIn.