75

The legacy of
a community committed

Research. Policy. Opportunity. Freedom. As we celebrate 75 years of progress, we have no intention of slowing down. We’re building on this momentum by:

Scroll down and swipe left or right to explore the moments in which we’ve made history—and the impacts that have been felt by millions.

1949

Dr. Ade Milhorat is one of few doctors researching muscular dystrophies worldwide

In 1949, Dr. Ade Milhorat of New York Hospital-Cornell Medical Center was one of only a handful of doctors in the world researching muscular dystrophies. His research work lost funding, and it might well have been the end of his efforts were it not for a friend who also had muscular dystrophy. That friend was Paul Cohen.

1950

The Muscular Dystrophy Association of America is founded

On June 6, 1950, Paul Cohen, a prominent New York businessman with a form of muscular dystrophy (FSH), invited a group of individuals to meet in his Rye, NY office. Each had a personal connection to muscular dystrophy, and the gathering focused on the urgent need to raise funds to advance research seeking treatments and cures for muscular dystrophy. The group formed the Muscular Dystrophy Association of America (MDAA)*, and two months later, MDA made its first research grant to support Dr. Milhorat’s research program.

1952

Dean Martin, Jerry Lewis promote MDA on national radio

During their January 4, 1952 radio program, Martin and Lewis make an appeal for nationwide support of MDA. Later that year, Martin and Lewis were named MDA National Co-Chairmen.

1952

MDA Ambassador Program launched

MDA introduces its first Ambassador Program to raise awareness about muscular dystrophy and other neuromuscular disorders. Over time, the program evolves to highlight the strength and diverse stories of people living with neuromuscular disease in the MDA community.

1952

Five MDA Local Telethons Held in Two Years

Early to recognize the power of television to bolster awareness and raise income for the Association, MDA’s top fundraising priority was the pioneering work of establishing local Telethons featuring a variety of celebrities. Thanks to the help of top stars like Robert Alda, Dick Van Dyke, Captain Video and Virginia Graham, MDA successfully hosted five local Telethons in two years in Cleveland; Washington DC; Atlanta; Grand Rapids; and Madison, Wisconsin.

1953

The first MDA Care Centers are established

The first MDA Care Centers are established at NYU Langone Health and University of Rochester Medical Center, providing specialized neuromuscular disease support and care—a foundation of MDA’s Care Center Network.

1953

National Association of Letter Carriers becomes MDA's first national sponsor

MDA Founder Paul Cohen recruits the National Association of Letter Carriers (NALC) as the organization’s first national sponsor. The NALC quickly established a nationwide door-to-door campaign for MDA, the first of which took place on November 25, 1953. The inaugural campaign was heralded by a special two-hour coast to coast television show hosted by Martin and Lewis.

1954

The International Association Resolves to Fight Muscular Dystrophy and "Fills the Boot"

Early in 1954, a group of families affected by muscular dystrophy approached Local 718 fire station in the Boston area to ask professional fire fighters to help fight muscular dystrophy. Responding enthusiastically, the fire fighters took to the streets with their boots in hand to ask greater Boston to make donations that would be used to fight muscular dystrophy. The Fill the Boot campaign was an instant success and on August 19, 1954, the International Association of Fire Fighters (IAFF) membership passed a resolution to support the Association’s fight against muscular dystrophy until treatments and cures are found.

1955

Eleanor Gehrig named MDA's National Campaign Chairperson

After losing her husband, New York Yankees icon Lou Gehrig, to ALS, Eleanor Gehrig made it her mission to help others with the disease. To do so, she partnered with MDA, spearheading advocacy and care efforts that changed the future of life with ALS for good.

1955

MDA holds first MDA Summer Camp

MDA holds its first Summer Camp with 16 campers in Sussex, NJ, creating a unique place for children with neuromuscular diseases to experience independence, build friendships, and have fun in an accessible environment.

1956

Martin and Lewis Local Telethon for MDA at Carnegie Hall

Martin and Lewis co-hosted the 1956 Telethon at New York City’s famed Carnegie Hall and broadcast June 29-30 on Dumont Station WABD (now WABC) in New York, raising some $600,000.

1966

MDA's Legendary Labor Day Telethon Series Begins

The first MDA Jerry Lewis Labor Day Telethon was broadcast in 1966 by a single station, WNEW-TV in New York. The telecast, which resulted in $1,002,114 being pledged, was so successful that MDA selected Labor Day weekend for its future Telethons.

1971

MDA Labor Day Telethon seen across the country

Robert M. Bennett (President of Metromedia Broadcasting), creates the “Love Network” of stations that facilitates the nation’s first networked Telethon in 1971.

1983

The Orphan Drug Act (ODA) of 1983 enacted.

The Orphan Drug Act (ODA) of 1983 was enacted to provide incentives to support research and development into drugs for rare diseases with small patient populations.

1986

CITGO Joins Forces with MDA

CITGO Petroleum Corporation begins its enduring partnership with the Muscular Dystrophy Association. Over the decades, CITGO employees, marketers, and retailers have supported MDA through volunteer efforts and community engagement, helping to advance critical programs such as MDA Care Centers, summer camps, and research initiatives.

1986

MDA-funded discovery of the DMD gene launches a new era in genetic research and therapies.

In 1986, MDA-funded researcher Dr. Lou Kunkel and his team identified the gene responsible for Duchenne and Becker muscular dystrophy, a landmark discovery that paved the way for targeted research and innovative treatments. This breakthrough marked the beginning of the gene discovery era, transforming scientific understanding of neuromuscular diseases and laying the foundation for advancements in genetic therapies that continue to benefit the neuromuscular community today.

1988

MDA funds SMA Cell Bank to advance gene discovery

MDA funds Dr. Conrad Gilliam and collaborators to establish the SMA Cell Bank, accelerating the discovery of the SMA-causing gene through groundbreaking natural history studies.

1990

Americans with Disabilities Act (ADA) signed into law

On July 26, 1990, President George H.W. Bush signed into law this landmark civil rights legislation intended to eliminate barriers for people with disabilities. Driven by the advocacy work of MDA and other organizations, this pivotal law represents a critical milestone in advancing the rights and independence of people living with neuromuscular diseases.

1992

Genetic mutations causing myotonic dystrophy type 1 identified

In 1992, MDA supported research leading to the identification of genetic mutations causing myotonic dystrophy type 1 (DM1)

1993

Mutations in PMP22 identified as a causative for CMT1A

In 1993, mutations in PMP22 were identified as a causative for CMT1A (first localized to 17p11.2) by a collaborative group sponsored by MDA.

1995

FDA approves Riluzole, first treatment for ALS

In 1995, the FDA approved riluzole, the first-ever treatment for ALS, offering new hope for people living with the disease. Backed by years of research, including contributions from MDA-supported scientists, riluzole’s approval represented a critical step in ALS treatment, paving the way for further advancements in therapies aimed at improving quality of life and extending survival for people living with ALS.

1996

American Medical Association honors MDA with the Lifetime Achievement Award

In 1996, the American Medical Association honored MDA with the prestigious Lifetime Achievement Award, recognizing decades of pioneering work in neuromuscular disease research, care, and advocacy. This accolade underscores MDA's enduring commitment to leading efforts that have shaped the landscape of neuromuscular medicine.

1998

MDA-funded work leads to three FDA-approved exon skipping drugs for Duchenne muscular dystrophy

In 1998. MDA-funded research contributed to the development of three FDA-approved exon-skipping drugs for Duchenne muscular dystrophy, offering targeted treatment options for specific genetic mutations within the disorder. These therapies marked a significant advancement in Duchenne care, slowing disease progression for eligible individuals and opening doors to further genetic-based approaches.

1999

MDA funds first clinical trial for gene therapy for any type of muscular dystrophy.

In 1999, the Muscular Dystrophy Association funded the first clinical trial for gene therapy for any type of muscular dystrophy. This trial was led by Dr. Jerry Mendell and was the first gene therapy trial for muscular dystrophy.

2000

MDA funds research to boost SMN2 gene expression for SMA treatment.

In 2000, MDA funded Dr. Christian Lorson (Arizona State University) to investigate factors that can help increase expression of full length SMN protein from the SMN2 gene.

2001

Genetic mutation causing myotonic dystrophy type 2 identified.

In 2001, a team led by Dr. Thomas R. Ranum and Dr. Maurice Day discovered the CCTG tetranucleotide repeat expansion in the CNBP (ZNF9) gene responsible for DM2.

2001

U.S. Congress Passes the MD-CARE Act

The 2001 passage of the MD CARE Act, championed by MDA advocates and allies, marked a pivotal achievement in the fight against muscular dystrophy by expanding federal support for research, care, and resources across the country.

2003

The Centers of Excellence program in muscular dystrophy research is established by NIH

The Centers of Excellence program in muscular dystrophy research was established in 2003 by NIH in honor of the late Senator Paul D. Wellstone of Minnesota.

The Wellstone Centers focus on translating basic research into clinical applications, enhancing diagnostics, and developing new therapies, with an emphasis on collaboration across institutions.

2006

MDA funds the first-ever gene therapy trial for Duchenne muscular dystrophy

In 2006, MDA funded the first-ever gene therapy trial for Duchenne muscular dystrophy, marking a transformative moment in the pursuit of neuromuscular disease treatments. This pioneering trial paveed the way for gene-based approaches aimed at addressing the root causes of Duchenne, opening the door to innovative therapies for a range of neuromuscular diseases.

2006

FDA approves Lumizyme (alglucosidase alfa) for the treatment of Pompe Disease

In 2006, the FDA approved Lumizyme, a groundbreaking enzyme replacement therapy for Pompe disease. The development of the therapy, funded in part by MDA, marked a significant advancement in care, offering new hope for improved quality of life.

2007

MDA funds Dr. Adrian Krainer's antisense therapy research, leading to Spinraza for SMA

In 2007, MDA funded pioneering research by Dr. Adrian Krainer in antisense therapy, leading to a breakthrough in treatment for spinal muscular atrophy (SMA). Dr. Krainer’s work culminates in the development and FDA approval of Spinraza, the first therapy to effectively target the genetic root of SMA, transforming SMA from a terminal diagnosis in young children to a manageable condition.

2010

Surveying New Therapeutive Avenues

In 2010, MDA awarded multiple grants to explore SMA gene therapy, gene delivery, novel ASO therapies, and new small molecule targets in mouse and zebrafish models of SMA.

2011

Identification of C9ORF mutations in ALS

In 2011, MDA-funded research led to the identification of C9ORF72 gene mutation as the most common genetic cause of ALS and FTD.

2015

MDA makes the difficult decision to end its historic Telethon tradition

As families and supporters began looking for new ways to support and get involved with the organization, MDA embraced new opportunities through social media and other digital channels to inspire the nation in support of the fight against neuromuscular diseases.

2015

FDA approves Keveyis for treating periodic paralysis

In 2015, the FDA approved MDA-funded Keveyis (Dichlorphena-mide) for the treatment of hyperkalemic and hypokalemic periodic paralysis.

2015

MDA establishes the MDA Resource Center to provide trusted guidance and support nationwide

In 2015, MDA established the MDA Resource Center as the organization’s national information hub, offering individuals and families a reliable source of information, guidance, and support to navigate life with neuromuscular disease.

2016

FDA approves Exondys 51 (eteplirsen) for the treatment of DMD

After decades of funding Duchenne muscular dystrophy research, the MDA-supported landmark treatment, Exondys 51 (eteplirsen), was approved by the FDA in 2016. This therapy was the first approved drug to treat Duchenne muscular dystrophy (DMD) in patients who have a confirmed mutation of the dystrophin gene amenable to exon 51 skipping.

2016

FDA approves Spinraza (nusinersen) for the treatment of SMA

In 2016, the FDA issued a landmark approval for Spinraza, providing life-changing therapeutic options for indivisuals with SMA. With foundational support from MDA, this treatment offers the potential to slow disease progression and improve motor function.

2017

FDA approves Emflaza (deflazacort) for the treatment of Duchenne Muscular Dystrophy

In 2017, the FDA approved Emflaza, a signature treatment for the most common form of childhood muscular dystrophy, Duchenne, after decades of MDA research, funding, and trials.

2017

FDA approves Radicava (edaravone) for the treatment of ALS

After completing human trials at more than a dozen MDA care centers, the FDA approved Radicava for the treatment of ALS in 2017.

2017

FDA approves Soliris (eculizumab) for the treatment of myasthenia gravis

In 2017, the FDA approved Soliris for the treatment of myasthenia gravis. A first-of-its-kind complement inhibitor drug, this therapeutic strategy has paved the way for new care options for the MDA community, and new paths for MDA-funded research.

2018

Decoding Disease Mechanisms

In 2018, MDA funded grants to Dr. Arthur Burghes (Ohio State) for identifying modifiers of disease and Dr. Rashmi Kothary(Ottawa Hospital Research Institute) to study abnormal metabolism in SMA.

2018

MDA launches the MOVR Data Hub™

In 2018, MDA launched the MOVR (NeuroMuscular ObserVational Research) Data Hub™, a neuromuscular disease data platform that centralizes clinical information from MDA Care Centers across the country. This comprehensive resource empowers researchers, clinicians, and healthcare providers with real-time insights, accelerating progress in understanding disease patterns, treatment outcomes, and patient needs.

2018

Adrian Krainer, PhD, wins Breakthrough Prize for developing Spinraza, an SMA therapy

In 2018, MDA researcher Adrian Krainer, PhD, received the Breakthrough Prize in Life Sciences for the development of an effective antisense oligonucleotide therapy (Spinraza) for children with SMA.Dr. Krainer’s work with Spinraza underscores the power of targeted genetic therapies and sets a precedent for future innovations in treating neuromuscular diseases.

2018/2019

FDA approves Firdapse/Ruzurgi (amifampridine) for the treatment of Lambert-Eaton Myasthenic Syndrome (LEMS)

As the first treatment for adults with Lambert-Eaton Myasthenic Syndrome (LEMS), the 2018 FDA approval of MDA-supported treatment Firdapse marked a significant step forward in addressing the needs of individuals with LEMS by providing a dedicated therapy to improve muscle strength and quality of life.

2019

FDA approves Zolgensma (onasemnogenebeparvovec-xioi) for the treatment of SMA

In 2019, the FDA approved Zolgensma, a first-of-its-kind, one-time gene therapy that transformed the treatment landscape for SMA. This groundbreaking gene therapy was made possible through the contributions of countless MDA researchers.

2019

FDA approves Vyondys 53 (golodirsen) for the treatment of Duchenne muscular dystrophy

In 2019, the FDA approved Vyondys 53 for the treatment of Duchenne muscular dystrophy. The second ever exon-skipping, disease-modifying drug for DMD, this MDA-supported treatment builds on the momentum created by eteplirsen in developing effective solutions for the challenges of Duchenne.

2019

MDA Hosts First Clinical and Scientific Conference

In 2019, MDA united its previously separate Clinical and Scientific Conferences into one premier event, bringing together the world’s leading experts in neuromuscular medicine and research. This decision fostered interdisciplinary collaboration, facilitating the exchange of ideas between clinicians, researchers, and industry leaders. The combined conference has since become a prestigious convening of experts, advancing innovations in care, sharing groundbreaking research, and accelerating progress in the neuromuscular field.

2020

FDA approves Viltepso (viltolarsen) to treat Duchenne muscular dystrophy

In 2020, the FDA approved the third-ever, exon-skipping treatment, Viltepso, for the fight against DMD. Supported by MDA, this breakthrough builds upon the successes of eteplirsen and golodirsen to create more meaningful treatment options for those living with Duchenne.

2020

FDA approves Evrysdi (risdiplam) to treat spinal muscular atrophy

In 2020, the FDA approved Evrysdi, the third-ever disease modifying therapy approved to treat spinal muscular atrophy. As the leading genetic cause of infant death, this SMA treatment has had a resounding effect on people throughout the MDA community.

2020

Congress passes the ALS Disability Insurance Access Act

In 2020, Congress passed the ALS Disability Insurance Access Act, helping address the urgent needs of the ALS community by eliminating the benefit waiting period and ensuring that individuals with ALS can access SSDI benefits immediately after approval, to receive timely assistance for medical expenses, adaptive equipment, and other essential needs. In partnership with several ALS organizations, MDA's advocacy work helped bring about this landmark legislation, furthering support for individuals and families during a challenging time.

2020

MDA launches Let's Play

In 2020, MDA introduced the Let’s Play program, a unique initiative designed to build an inclusive community for gamers living with neuromuscular diseases. Through adaptive gaming technology, tournaments, and social connections, Let’s Play empowers individuals to participate in gaming experiences regardless of physical limitations.

2020

MDA introduces MDA Virtual Summer Camp

In response to the COVID-19 pandemic, MDA reimagined its beloved Summer Camp by creating a virtual experience for kids and teens living with neuromuscular diseases. The Virtual Summer Camp brought the spirit of connection, fun, and independence directly into campers' homes through interactive activities, games, and shared experiences, ensuring the MDA Summer Camp tradition continued to provide meaningful opportunities for friendship and engagement.

2021

FDA approves Vyvgart (efgartigimod alfa-fcab) to treat generalized myasthenia gravis.

In 2021, the FDA approved Vyvgart as a treatment for generalized myasthenia gravis. Replacing time-consuming infusions with a simple, at-home shot, this MDA-supported treatment creates new hope, new freedom, and new possibilities for those living with gMG.

2021

FDA approves Amondys 45 (casimersen) to treat Duchenne muscular dystrophy

The FDA’s decision to approve Amondys 45 highlights the importance of years of commitment to supporting and funding breakthrough research by MDA and others into gene identification and unlocking the cause of DMD.

2021

FDA approves Octagam 10% [Immune Globulin Intraveneous (Human)] to treat adult dermatomyositis

The FDA’s approval of Octapharma’s Octagam 10% [Immune Globulin Intravenous (Human)] for adults with dermatomyositis marked a meaningful step forward in treating inflammatory myopathies. MDA’s longstanding commitment to funding key research on muscle diseases helped build the knowledge base that makes treatments like Octagam 10 possible.

2021

FDA approves Nexviazyme (avalglucosidase alfa-ngpt) to treat late-onset Pompe disease

The 2021 approval of Nexviazyme by the FDA provided new treatment options for people and families living with Pompe disease. An alternative therapy to the MDA-supported Myozyme, this approval marked an important expansion of drug options to improve lives within the Pompe and MDA communities.

2021

Congress passes the ACT for ALS

In 2021, Congress passed the ACT for ALS, a landmark piece of legislation that accelerates access to urgently needed therapies for the ALS and neuromuscular disease communities. Supported by advocacy from MDA and allies, this Act establishes new pathways to fast-track experimental treatments and expands federal funding for ALS research, bringing hope to thousands of individuals and families facing these progressive diseases.

2021

MDA establishes the MDA Mentorship Program

In 2021, MDA launched the MDA Mentorship Program to support youth and young adults with neuromuscular disease as they navigate higher education and career pathways. This unique program pairs participants with mentors who provide guidance, share insights, and foster connections that help young adults pursue their academic and professional goals with confidence.

2022

FDA approves Ultomiris (ravulizumab-cwvz) to treat generalized myasthenia gravis

The 2022 FDA approval of Ultomiris for treating generalized myasthenia gravis welcomed new therapeutic options for those living with the disease. Studied across 36 MDA Care Centers, this drug and its approval signaled another major step forward in the fight against gMG.

2022

FDA approves Relyvrio (sodium phenylbutyrate/taurursodiol) to treat ALS

In 2022, the FDA approval of Relyvrio marked the fourth approved therapy to treat ALS and the first to target its genetic cause. Developed with substantial support by MDA and other organizations, this treatment is a realization of the hope that genetic medicines could be effective for ALS patients and their families.

2022

MDA introduces the Quest Media Lifestyle platform

In 2022, MDA introduced the Quest Media Lifestyle platform, a comprehensive resource designed to enhance the lives of individuals and families in the disability community. Through engaging articles, expert insights, personal stories, and practical advice, Quest Media offers readers a supportive space to explore topics ranging from health and wellness to accessible technology, education, and career growth.

2022

MDA Advocacy Collaboration Grant program launched

Established in 2022, the Muscular Dystrophy Association Advocacy Collaboration Grant Program funds public policy and advocacy projects that benefit the neuromuscular disease community, supporting initiatives such as non-partisan advocacy campaigns, research projects, stakeholder meetings, and grassroots advocate training.

2022

The Centers for Medicare and Medicaid Services creates new diagnostic codes for LGMD

In 2022, the Centers for Medicare and Medicaid services created new diagnostic codes for limb-girdle muscular dystrophy (LGMD), potentially shortening the diagnostic odyssey that patients face. Lobbied for by MDA and a number of LGMD organizations, these codes will help provide more precise medical care, improve clinical trials, and increase future access to targeted treatments.

2022

Congress passes the FDA User Fee Reauthorization Act

In 2022, the FDA User Fee Reauthorization Act passed Congress, clearing the way for an acceleration of treatment and cure development for rare diseases. This MDA-supported legislation included a suite of incredibly important programs and initiatives including expedited regulatory review, investment in gene and cell therapies, and more.

2023

FDA approves Agamree (vamorolone) to treat Duchenne muscular dystrophy

In 2023, Agamree, a novel therapy supported by MDA Venture Philanthropy, was approved by the FDA for the treatment of DMD.

2023

FDA approves Pombiliti™ (cipaglucosidase alfa-atga) + Opfolda™ (miglustat) 65mg capsules for adults living with late-onset Pompe disease

This approval marked a new chapter in expanding treatment options for Pompe disease. MDA’s funding of foundational research at Duke University contributed to the development of Myozyme, the first approved Pompe therapy.

2023

FDA approves Rystiggo (rozanolixizumab-noli) to treat generalized myasthenia gravis

Rystiggo (rozanolixizumab-noli) is used to treat generalized myasthenia gravis in adults who are anti-acetylcholine receptor- or anti-muscle-specific tyrosine kinase antibody-positive.

2023

FDA approves Qalsody (tofersen) to treat ALS

Qalsody is approved for use for adults with an ALS SOD1 mutation.

2023

FDA approves Skyclaris (omaveloxolone) to treat Friederich's ataxia

Clinical trials of Skyclarys took place at MDA Care Center Network locations including UCLA, University of Florida Neurology, Emory University Hospital, The Ohio State University, and Children's Hospital of Philadelphia.

2023

MDA Kickstart Program launched

In 2023, MDA introduced the Kickstart Program to accelerate the development of therapies for ultra-rare neuromuscular diseases. By providing critical funding and resources to early-stage projects, Kickstart bridges the gap between basic research and clinical application, paving the way for innovative treatments by fostering collaboration among researchers.

2023

MDA creates the Gene Therapy Support Network

In 2023, MDA launched the Gene Therapy Support Network to equip individuals and families with essential information and support as groundbreaking gene therapies emerge for neuromuscular diseases. This first-of-its-kind initiative offers up-to-date resources, expert guidance, and a dedicated support system to help families navigate the complex world of gene therapy.

2023

MDA establishes MDA Connect

In 2023, MDA introduced the MDA Connect program, offering individuals and families affected by neuromuscular diseases personalized, one-on-one video consultations with MDA Specialists. This program provides convenient access to expert guidance on navigating care within MDA’s Care Center Network, locating resources, and learning about MDA programs and engagement opportunities.

2023

MDA Introduces Family Getaways Program

In 2023, MDA launched the MDA Family Getaways program, offering MDA community members of all ages, along with their families, unique and accessible recreation experiences and connection to others.

2024

A new era of treatment for neuromuscular diseases emerges

In 2024, a new era of treatments emerged with more than 20 FDA-approved therapies now available for neuromuscular diseases—including the first ever treatments for Duchenne muscular dystrophy and spinal muscular atrophy—thanks in part to research supported by MDA

2024

FDA approves Duvyzat (givinostat) to treat Duchenne muscular dystrophy

In 2024, MDA's funding of foundational research led to the FDA approval of Duvyzat, a drug for treating DMD in people 6 years and older.

2024

MDA Gene Therapy Support Network honored at 2024 Advanced Therapies Awards

MDA’s Gene Therapy Support Network received honors at the 2024 Patient Advocacy Award for Non-Profits at the Advanced Therapies Awards.

2024

Congress Passes Air Travel Accessibility Reforms

Due to the dedicated efforts of advocates and the MDA community, Congress passed landmark air travel accessibility reforms within the FAA Reauthorization Act of 2024. This historic legislation mandated critical improvements in air travel standards to ensure safe, dignified, and accessible travel for persons with disabilities. Additionally, it addressed long-standing barriers faced by people with mobility impairments, setting new standards for seating, boarding procedures, and wheelchair handling, among other areas.

2024

All 50 states and DC implement newborn screening for SMA

Thanks in part to MDA’s strong advocacy efforts, all 50 states and Washington, DC, implemented newborn screening for spinal muscular atrophy (SMA) in 2024, making early diagnosis and intervention possible for every newborn with this condition.

2024

MDA College Scholarship Program Established

In 2024, MDA introduced a college scholarship program designed to empower young people with neuromuscular disease as they pursue higher education and career training. This program provides financial support to students, helping to alleviate barriers to educational opportunities and open pathways to personal and professional growth.

75

The legacy of
a community committed

Research. Policy. Opportunity. Freedom.
As we celebrate 75 years of progress, we have no intention of slowing down. We’re building on this momentum by:

  • Expanding research into gene therapies and muscle regeneration
  • Advocating for policies that empower people with neuromuscular disease
  • Supporting access to medical care through MDA’s Care Center Network
  • Continuing to build and empower a strong, connected community

Scroll down to explore the moments in which we’ve made history—and the impacts that have been felt by millions.

1949

Dr. Ade Milhorat is one of few doctors researching muscular dystrophies worldwide

In 1949, Dr. Ade Milhorat of New York Hospital-Cornell Medical Center was one of only a handful of doctors in the world researching muscular dystrophies. His research work lost funding, and it might well have been the end of his efforts were it not for a friend who also had muscular dystrophy. That friend was Paul Cohen.

1950

The Muscular Dystrophy Association of America is founded

On June 6, 1950, Paul Cohen, a prominent New York businessman with a form of muscular dystrophy (FSH), invited a group of individuals to meet in his Rye, NY office. Each had a personal connection to muscular dystrophy, and the gathering focused on the urgent need to raise funds to advance research seeking treatments and cures for muscular dystrophy. The group formed the Muscular Dystrophy Association of America (MDAA)*, and two months later, MDA made its first research grant to support Dr. Milhorat’s research program.

1952

Dean Martin, Jerry Lewis promote MDA on national radio

During their January 4, 1952 radio program, Martin and Lewis make an appeal for nationwide support of MDA. Later that year, Martin and Lewis were named MDA National Co-Chairmen.

1952

MDA Ambassador Program launched

MDA introduces its first Ambassador Program to raise awareness about muscular dystrophy and other neuromuscular disorders. Over time, the program evolves to highlight the strength and diverse stories of people living with neuromuscular disease in the MDA community.

1952

Five MDA Local Telethons Held in Two Years

Early to recognize the power of television to bolster awareness and raise income for the Association, MDA’s top fundraising priority was the pioneering work of establishing local Telethons featuring a variety of celebrities. Thanks to the help of top stars like Robert Alda, Dick Van Dyke, Captain Video and Virginia Graham, MDA successfully hosted five local Telethons in two years in Cleveland; Washington DC; Atlanta; Grand Rapids; and Madison, Wisconsin.

1953

The first MDA Care Centers are established

The first MDA Care Centers are established at NYU Langone Health and University of Rochester Medical Center, providing specialized neuromuscular disease support and care—a foundation of MDA’s Care Center Network.

1953

National Association of Letter Carriers becomes MDA's first national sponsor

MDA Founder Paul Cohen recruits the National Association of Letter Carriers (NALC) as the organization’s first national sponsor. The NALC quickly established a nationwide door-to-door campaign for MDA, the first of which took place on November 25, 1953. The inaugural campaign was heralded by a special two-hour coast to coast television show hosted by Martin and Lewis.

1954

The International Association Resolves to Fight Muscular Dystrophy and "Fills the Boot"

Early in 1954, a group of families affected by muscular dystrophy approached Local 718 fire station in the Boston area to ask professional fire fighters to help fight muscular dystrophy. Responding enthusiastically, the fire fighters took to the streets with their boots in hand to ask greater Boston to make donations that would be used to fight muscular dystrophy. The Fill the Boot campaign was an instant success and on August 19, 1954, the International Association of Fire Fighters (IAFF) membership passed a resolution to support the Association’s fight against muscular dystrophy until treatments and cures are found.

1955

Eleanor Gehrig named MDA's National Campaign Chairperson

After losing her husband, New York Yankees icon Lou Gehrig, to ALS, Eleanor Gehrig made it her mission to help others with the disease. To do so, she partnered with MDA, spearheading advocacy and care efforts that changed the future of life with ALS for good.

1955

MDA holds first MDA Summer Camp

MDA holds its first Summer Camp with 16 campers in Sussex, NJ, creating a unique place for children with neuromuscular diseases to experience independence, build friendships, and have fun in an accessible environment.

1956

Martin and Lewis Local Telethon for MDA at Carnegie Hall

Martin and Lewis co-hosted the 1956 Telethon at New York City’s famed Carnegie Hall and broadcast June 29-30 on Dumont Station WABD (now WABC) in New York, raising some $600,000.

1966

MDA's Legendary Labor Day Telethon Series Begins

The first MDA Jerry Lewis Labor Day Telethon was broadcast in 1966 by a single station, WNEW-TV in New York. The telecast, which resulted in $1,002,114 being pledged, was so successful that MDA selected Labor Day weekend for its future Telethons.

1971

MDA Labor Day Telethon seen across the country

Robert M. Bennett (President of Metromedia Broadcasting), creates the “Love Network” of stations that facilitates the nation’s first networked Telethon in 1971.

1983

The Orphan Drug Act (ODA) of 1983 enacted.

The Orphan Drug Act (ODA) of 1983 was enacted to provide incentives to support research and development into drugs for rare diseases with small patient populations.

1986

CITGO Joins Forces with MDA

CITGO Petroleum Corporation begins its enduring partnership with the Muscular Dystrophy Association. Over the decades, CITGO employees, marketers, and retailers have supported MDA through volunteer efforts and community engagement, helping to advance critical programs such as MDA Care Centers, summer camps, and research initiatives.

1986

MDA-funded discovery of the DMD gene launches a new era in genetic research and therapies.

In 1986, MDA-funded researcher Dr. Lou Kunkel and his team identified the gene responsible for Duchenne and Becker muscular dystrophy, a landmark discovery that paved the way for targeted research and innovative treatments. This breakthrough marked the beginning of the gene discovery era, transforming scientific understanding of neuromuscular diseases and laying the foundation for advancements in genetic therapies that continue to benefit the neuromuscular community today.

1988

MDA funds SMA Cell Bank to advance gene discovery

MDA funds Dr. Conrad Gilliam and collaborators to establish the SMA Cell Bank, accelerating the discovery of the SMA-causing gene through groundbreaking natural history studies.

1990

Americans with Disabilities Act (ADA) signed into law

On July 26, 1990, President George H.W. Bush signed into law this landmark civil rights legislation intended to eliminate barriers for people with disabilities. Driven by the advocacy work of MDA and other organizations, this pivotal law represents a critical milestone in advancing the rights and independence of people living with neuromuscular diseases.

1992

Genetic mutations causing myotonic dystrophy type 1 identified

In 1992, MDA supported research leading to the identification of genetic mutations causing myotonic dystrophy type 1 (DM1)


1993

Mutations in PMP22 identified as a causative for CMT1A

In 1993, mutations in PMP22 were identified as a causative for CMT1A (first localized to 17p11.2) by a collaborative group sponsored by MDA.

1995

FDA approves Riluzole, first treatment for ALS

In 1995, the FDA approved riluzole, the first-ever treatment for ALS, offering new hope for people living with the disease. Backed by years of research, including contributions from MDA-supported scientists, riluzole’s approval represented a critical step in ALS treatment, paving the way for further advancements in therapies aimed at improving quality of life and extending survival for people living with ALS.

1996

American Medical Association honors MDA with the Lifetime Achievement Award

In 1996, the American Medical Association honored MDA with the prestigious Lifetime Achievement Award, recognizing decades of pioneering work in neuromuscular disease research, care, and advocacy. This accolade underscores MDA's enduring commitment to leading efforts that have shaped the landscape of neuromuscular medicine.

1998

MDA-funded work leads to three FDA-approved exon skipping drugs for Duchenne muscular dystrophy

In 1998. MDA-funded research contributed to the development of three FDA-approved exon-skipping drugs for Duchenne muscular dystrophy, offering targeted treatment options for specific genetic mutations within the disorder. These therapies marked a significant advancement in Duchenne care, slowing disease progression for eligible individuals and opening doors to further genetic-based approaches.

1999

MDA funds first clinical trial for gene therapy for any type of muscular dystrophy

In 1999, the Muscular Dystrophy Association funded the first clinical trial for gene therapy for any type of muscular dystrophy. This trial was led by Dr. Jerry Mendell and was the first gene therapy trial for muscular dystrophy.

2000

MDA funds research to boost SMN2 gene expression for SMA treatment.

In 2000, MDA funded Dr. Christian Lorson (Arizona State University) to investigate factors that can help increase expression of full length SMN protein from the SMN2 gene.

2001

Genetic mutation causing myotonic dystrophy type 2 identified.

In 2001, a team led by Dr. Thomas R. Ranum and Dr. Maurice Day discovered the CCTG tetranucleotide repeat expansion in the CNBP (ZNF9) gene responsible for DM2.

2001

U.S. Congress Passes the MD-CARE Act

The 2001 passage of the MD CARE Act, championed by MDA advocates and allies, marked a pivotal achievement in the fight against muscular dystrophy by expanding federal support for research, care, and resources across the country.

2003

The Centers of Excellence program in muscular dystrophy research is established by NIH

The Centers of Excellence program in muscular dystrophy research was established in 2003 by NIH in honor of the late Senator Paul D. Wellstone of Minnesota.

The Wellstone Centers focus on translating basic research into clinical applications, enhancing diagnostics, and developing new therapies, with an emphasis on collaboration across institutions.

2006

MDA funds the first-ever gene therapy trial for Duchenne muscular dystrophy

In 2006, MDA funded the first-ever gene therapy trial for Duchenne muscular dystrophy, marking a transformative moment in the pursuit of neuromuscular disease treatments. This pioneering trial paveed the way for gene-based approaches aimed at addressing the root causes of Duchenne, opening the door to innovative therapies for a range of neuromuscular diseases.

2006

FDA approves Lumizyme (alglucosidase alfa) for the treatment of Pompe Disease

In 2006, the FDA approved Lumizyme, a groundbreaking enzyme replacement therapy for Pompe disease. The development of the therapy, funded in part by MDA, marked a significant advancement in care, offering new hope for improved quality of life.

2007

MDA funds Dr. Adrian Krainer's antisense therapy research, leading to Spinraza for SMA

In 2007, MDA funded pioneering research by Dr. Adrian Krainer in antisense therapy, leading to a breakthrough in treatment for spinal muscular atrophy (SMA). Dr. Krainer’s work culminates in the development and FDA approval of Spinraza, the first therapy to effectively target the genetic root of SMA, transforming SMA from a terminal diagnosis in young children to a manageable condition.

2010

Surveying New Therapeutive Avenues

In 2010, MDA awarded multiple grants to explore SMA gene therapy, gene delivery, novel ASO therapies, and new small molecule targets in mouse and zebrafish models of SMA.

2011

Identification of C9ORF mutations in ALS

In 2011, MDA-funded research led to the identification of C9ORF72 gene mutation as the most common genetic cause of ALS and FTD.

2015

MDA makes the difficult decision to end its historic Telethon tradition

As families and supporters began looking for new ways to support and get involved with the organization, MDA embraced new opportunities through social media and other digital channels to inspire the nation in support of the fight against neuromuscular diseases.

2015

FDA approves Keveyis for treating periodic paralysis

In 2015, the FDA approved MDA-funded Keveyis (Dichlorphena-mide) for the treatment of hyperkalemic and hypokalemic periodic paralysis.

2015

MDA establishes the MDA Resource Center to provide trusted guidance and support nationwide

In 2015, MDA established the MDA Resource Center as the organization’s national information hub, offering individuals and families a reliable source of information, guidance, and support to navigate life with neuromuscular disease.

2016

FDA approves Exondys 51 (eteplirsen) for the treatment of DMD

After decades of funding Duchenne muscular dystrophy research, the MDA-supported landmark treatment, Exondys 51 (eteplirsen), was approved by the FDA in 2016. This therapy was the first approved drug to treat Duchenne muscular dystrophy (DMD) in patients who have a confirmed mutation of the dystrophin gene amenable to exon 51 skipping.


FDA approves Spinraza (nusinersen) for the treatment of SMA

In 2016, the FDA issued a landmark approval for Spinraza, providing life-changing therapeutic options for indivisuals with SMA. With foundational support from MDA, this treatment offers the potential to slow disease progression and improve motor function.

2017

FDA approves Emflaza (deflazacort) for the treatment of Duchenne Muscular Dystrophy

In 2017, the FDA approved Emflaza, a signature treatment for the most common form of childhood muscular dystrophy, Duchenne, after decades of MDA research, funding, and trials.


FDA approves Radicava (edaravone) for the treatment of ALS

After completing human trials at more than a dozen MDA care centers, the FDA approved Radicava for the treatment of ALS in 2017.


FDA approves Soliris (eculizumab) for the treatment of myasthenia gravis

In 2017, the FDA approved Soliris for the treatment of myasthenia gravis. A first-of-its-kind complement inhibitor drug, this therapeutic strategy has paved the way for new care options for the MDA community, and new paths for MDA-funded research.

2018

Decoding Disease Mechanisms

In 2018, MDA funded grants to Dr. Arthur Burghes (Ohio State) for identifying modifiers of disease and Dr. Rashmi Kothary(Ottawa Hospital Research Institute) to study abnormal metabolism in SMA.

2018

MDA launches the MOVR Data Hub™

In 2018, MDA launched the MOVR (NeuroMuscular ObserVational Research) Data Hub™, a neuromuscular disease data platform that centralizes clinical information from MDA Care Centers across the country. This comprehensive resource empowers researchers, clinicians, and healthcare providers with real-time insights, accelerating progress in understanding disease patterns, treatment outcomes, and patient needs.

2018

Adrian Krainer, PhD, wins Breakthrough Prize for developing Spinraza, an SMA therapy

In 2018, MDA researcher Adrian Krainer, PhD, received the Breakthrough Prize in Life Sciences for the development of an effective antisense oligonucleotide therapy (Spinraza) for children with SMA.Dr. Krainer’s work with Spinraza underscores the power of targeted genetic therapies and sets a precedent for future innovations in treating neuromuscular diseases.

2018/2019

FDA approves Firdapse/Ruzurgi (amifampridine) for the treatment of Lambert-Eaton Myasthenic Syndrome (LEMS)

As the first treatment for adults with Lambert-Eaton Myasthenic Syndrome (LEMS), the 2018 FDA approval of MDA-supported treatment Firdapse marked a significant step forward in addressing the needs of individuals with LEMS by providing a dedicated therapy to improve muscle strength and quality of life.

2019

FDA approves Zolgensma (onasemnogenebeparvovec-xioi) for the treatment of SMA

In 2019, the FDA approved Zolgensma, a first-of-its-kind, one-time gene therapy that transformed the treatment landscape for SMA. This groundbreaking gene therapy was made possible through the contributions of countless MDA researchers.

2019

FDA approves Vyondys 53 (golodirsen) for the treatment of Duchenne muscular dystrophy

In 2019, the FDA approved Vyondys 53 for the treatment of Duchenne muscular dystrophy. The second ever exon-skipping, disease-modifying drug for DMD, this MDA-supported treatment builds on the momentum created by eteplirsen in developing effective solutions for the challenges of Duchenne.

2019

MDA Hosts First Clinical and Scientific Conference

In 2019, MDA united its previously separate Clinical and Scientific Conferences into one premier event, bringing together the world’s leading experts in neuromuscular medicine and research. This decision fostered interdisciplinary collaboration, facilitating the exchange of ideas between clinicians, researchers, and industry leaders. The combined conference has since become a prestigious convening of experts, advancing innovations in care, sharing groundbreaking research, and accelerating progress in the neuromuscular field.

2020

FDA approves Viltepso (viltolarsen) to treat Duchenne muscular dystrophy

In 2020, the FDA approved the third-ever, exon-skipping treatment, Viltepso, for the fight against DMD. Supported by MDA, this breakthrough builds upon the successes of eteplirsen and golodirsen to create more meaningful treatment options for those living with Duchenne.


FDA approves Evrysdi (risdiplam) to treat spinal muscular atrophy

In 2020, the FDA approved Evrysdi, the third-ever disease modifying therapy approved to treat spinal muscular atrophy. As the leading genetic cause of infant death, this SMA treatment has had a resounding effect on people throughout the MDA community.

2020

Congress passes the ALS Disability Insurance Access Act

In 2020, Congress passed the ALS Disability Insurance Access Act, helping address the urgent needs of the ALS community by eliminating the benefit waiting period and ensuring that individuals with ALS can access SSDI benefits immediately after approval, to receive timely assistance for medical expenses, adaptive equipment, and other essential needs. In partnership with several ALS organizations, MDA's advocacy work helped bring about this landmark legislation, furthering support for individuals and families during a challenging time.

2020

MDA launches Let's Play

In 2020, MDA introduced the Let’s Play program, a unique initiative designed to build an inclusive community for gamers living with neuromuscular diseases. Through adaptive gaming technology, tournaments, and social connections, Let’s Play empowers individuals to participate in gaming experiences regardless of physical limitations.

2020

MDA introduces MDA Virtual Summer Camp

In response to the COVID-19 pandemic, MDA reimagined its beloved Summer Camp by creating a virtual experience for kids and teens living with neuromuscular diseases. The Virtual Summer Camp brought the spirit of connection, fun, and independence directly into campers' homes through interactive activities, games, and shared experiences, ensuring the MDA Summer Camp tradition continued to provide meaningful opportunities for friendship and engagement.

2021

FDA approves Vyvgart (efgartigimod alfa-fcab) to treat generalized myasthenia gravis.

In 2021, the FDA approved Vyvgart as a treatment for generalized myasthenia gravis. Replacing time-consuming infusions with a simple, at-home shot, this MDA-supported treatment creates new hope, new freedom, and new possibilities for those living with gMG.


FDA approves Amondys 45 (casimersen) to treat Duchenne muscular dystrophy

The FDA’s decision to approve Amondys 45 highlights the importance of years of commitment to supporting and funding breakthrough research by MDA and others into gene identification and unlocking the cause of DMD.


FDA approves Octagam 10% [Immune Globulin Intraveneous (Human)] to treat adult dermatomyositis

The FDA’s approval of Octapharma’s Octagam 10% [Immune Globulin Intravenous (Human)] for adults with dermatomyositis marked a meaningful step forward in treating inflammatory myopathies. MDA’s longstanding commitment to funding key research on muscle diseases helped build the knowledge base that makes treatments like Octagam 10 possible.


FDA approves Nexviazyme (avalglucosidase alfa-ngpt) to treat late-onset Pompe disease

The 2021 approval of Nexviazyme by the FDA provided new treatment options for people and families living with Pompe disease. An alternative therapy to the MDA-supported Myozyme, this approval marked an important expansion of drug options to improve lives within the Pompe and MDA communities.

2021

Congress passes the ACT for ALS

In 2021, Congress passed the ACT for ALS, a landmark piece of legislation that accelerates access to urgently needed therapies for the ALS and neuromuscular disease communities. Supported by advocacy from MDA and allies, this Act establishes new pathways to fast-track experimental treatments and expands federal funding for ALS research, bringing hope to thousands of individuals and families facing these progressive diseases.

2021

MDA establishes the MDA Mentorship Program

In 2021, MDA launched the MDA Mentorship Program to support youth and young adults with neuromuscular disease as they navigate higher education and career pathways. This unique program pairs participants with mentors who provide guidance, share insights, and foster connections that help young adults pursue their academic and professional goals with confidence.

2022

FDA approves Ultomiris (ravulizumab-cwvz) to treat generalized myasthenia gravis

The 2022 FDA approval of Ultomiris for treating generalized myasthenia gravis welcomed new therapeutic options for those living with the disease. Studied across 36 MDA Care Centers, this drug and its approval signaled another major step forward in the fight against gMG.


FDA approves Relyvrio (sodium phenylbutyrate/taurursodiol) to treat ALS

In 2022, the FDA approval of Relyvrio marked the fourth approved therapy to treat ALS and the first to target its genetic cause. Developed with substantial support by MDA and other organizations, this treatment is a realization of the hope that genetic medicines could be effective for ALS patients and their families.

2022

MDA introduces the Quest Media Lifestyle platform

In 2022, MDA introduced the Quest Media Lifestyle platform, a comprehensive resource designed to enhance the lives of individuals and families in the disability community. Through engaging articles, expert insights, personal stories, and practical advice, Quest Media offers readers a supportive space to explore topics ranging from health and wellness to accessible technology, education, and career growth.

2022

MDA Advocacy Collaboration Grant program launched

Established in 2022, the Muscular Dystrophy Association Advocacy Collaboration Grant Program funds public policy and advocacy projects that benefit the neuromuscular disease community, supporting initiatives such as non-partisan advocacy campaigns, research projects, stakeholder meetings, and grassroots advocate training.

2022

The Centers for Medicare and Medicaid Services creates new diagnostic codes for LGMD

In 2022, the Centers for Medicare and Medicaid services created new diagnostic codes for limb-girdle muscular dystrophy (LGMD), potentially shortening the diagnostic odyssey that patients face. Lobbied for by MDA and a number of LGMD organizations, these codes will help provide more precise medical care, improve clinical trials, and increase future access to targeted treatments.

2022

Congress passes the FDA User Fee Reauthorization Act

In 2022, the FDA User Fee Reauthorization Act passed Congress, clearing the way for an acceleration of treatment and cure development for rare diseases. This MDA-supported legislation included a suite of incredibly important programs and initiatives including expedited regulatory review, investment in gene and cell therapies, and more.

2023

FDA approves Agamree (vamorolone) to treat Duchenne muscular dystrophy

In 2023, Agamree, a novel therapy supported by MDA Venture Philanthropy, was approved by the FDA for the treatment of DMD.


FDA approves Pombiliti™ (cipaglucosidase alfa-atga) + Opfolda™ (miglustat) 65mg capsules for adults living with late-onset Pompe disease

This approval marked a new chapter in expanding treatment options for Pompe disease. MDA’s funding of foundational research at Duke University contributed to the development of Myozyme, the first approved Pompe therapy.


FDA approves Rystiggo (rozanolixizumab-noli) to treat generalized myasthenia gravis

Rystiggo (rozanolixizumab-noli) is used to treat generalized myasthenia gravis in adults who are anti-acetylcholine receptor- or anti-muscle-specific tyrosine kinase antibody-positive.


FDA approves Qalsody (tofersen) to treat ALS

Qalsody is approved for use for adults with an ALS SOD1 mutation.


FDA approves Skyclaris (omaveloxolone) to treat Friederich's ataxia

Clinical trials of Skyclarys took place at MDA Care Center Network locations including UCLA, University of Florida Neurology, Emory University Hospital, The Ohio State University, and Children's Hospital of Philadelphia.

2023

MDA Kickstart Program launched

In 2023, MDA introduced the Kickstart Program to accelerate the development of therapies for ultra-rare neuromuscular diseases. By providing critical funding and resources to early-stage projects, Kickstart bridges the gap between basic research and clinical application, paving the way for innovative treatments by fostering collaboration among researchers.

2023

MDA creates the Gene Therapy Support Network

In 2023, MDA launched the Gene Therapy Support Network to equip individuals and families with essential information and support as groundbreaking gene therapies emerge for neuromuscular diseases. This first-of-its-kind initiative offers up-to-date resources, expert guidance, and a dedicated support system to help families navigate the complex world of gene therapy.


MDA establishes MDA Connect

In 2023, MDA introduced the MDA Connect program, offering individuals and families affected by neuromuscular diseases personalized, one-on-one video consultations with MDA Specialists. This program provides convenient access to expert guidance on navigating care within MDA’s Care Center Network, locating resources, and learning about MDA programs and engagement opportunities.

2023

MDA Introduces Family Getaways Program

In 2023, MDA launched the MDA Family Getaways program, offering MDA community members of all ages, along with their families, unique and accessible recreation experiences and connection to others.

2024

A new era of treatment for neuromuscular diseases emerges

In 2024, a new era of treatments emerged with more than 20 FDA-approved therapies now available for neuromuscular diseases—including the first ever treatments for Duchenne muscular dystrophy and spinal muscular atrophy—thanks in part to research supported by MDA


FDA approves Duvyzat (givinostat) to treat Duchenne muscular dystrophy

In 2024, MDA's funding of foundational research led to the FDA approval of Duvyzat, a drug for treating DMD in people 6 years and older.

2024

MDA Gene Therapy Support Network honored at 2024 Advanced Therapies Awards

MDA’s Gene Therapy Support Network received honors at the 2024 Patient Advocacy Award for Non-Profits at the Advanced Therapies Awards.

2024

Congress Passes Air Travel Accessibility Reforms

Due to the dedicated efforts of advocates and the MDA community, Congress passed landmark air travel accessibility reforms within the FAA Reauthorization Act of 2024. This historic legislation mandated critical improvements in air travel standards to ensure safe, dignified, and accessible travel for persons with disabilities. Additionally, it addressed long-standing barriers faced by people with mobility impairments, setting new standards for seating, boarding procedures, and wheelchair handling, among other areas.

2024

All 50 states and DC implement newborn screening for SMA

Thanks in part to MDA’s strong advocacy efforts, all 50 states and Washington, DC, implemented newborn screening for spinal muscular atrophy (SMA) in 2024, making early diagnosis and intervention possible for every newborn with this condition.

2024

MDA College Scholarship Program Established

In 2024, MDA introduced a college scholarship program designed to empower young people with neuromuscular disease as they pursue higher education and career training. This program provides financial support to students, helping to alleviate barriers to educational opportunities and open pathways to personal and professional growth.

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