Below you’ll find some information that the Muscular Dystrophy Association provided about themselves for the myasthenia gravis (MG) community.
When was the Muscular Dystrophy Association founded, and what’s the story behind it?
In 1950, Paul Cohen, a prominent New York business leader living with muscular dystrophy, invited a group of people to his office who each had personal connections to muscular dystrophy. The gathering focused on the urgent need to raise funds for advancing research to seek treatments and cures for muscular dystrophy. So invested in the fight against neuromuscular diseases, the group formed the organization that became the Muscular Dystrophy Association. That year, MDA's first research grant for $1,500 was awarded to neuromuscular disease pioneer Ade T. Milhorat, M.D.
Since then, MDA has become the nation's largest non-governmental supporter of research for more than 40 different neuromuscular diseases. It has invested more than $1 billion in the laboratories of 7,000 scientists, helping to build the entire field of neuromuscular disease biology and pioneering technologies, such as the identification of disease-causing genes, gene therapy and gene editing. Over the past 12 years, research sponsored by the Muscular Dystrophy Association has led to the development of 16 FDA-approved therapies for neuromuscular diseases.
How many members does the Muscular Dystrophy Association have?
We have roughly 300,000 members.
Where does the Muscular Dystrophy Association operate?
We operate nationwide.
How to get involved
What resources does your advocacy organization provide to its members, and what can a new member expect when they join?
MDA is dedicated to empowering people living with neuromuscular diseases to achieve their full potential. We care for kids and adults from day one so they can get the very best treatment, and we empower them with services and support in hometowns across America to help them thrive and stay independent through the following programs and services:
- MDA Care Centers: We fund a network of care centers nationwide that provide best-in-class multidisciplinary care at top healthcare institutions across the United States.
- MDA Resource Center: Our national resource center is staffed by a dedicated team of knowledgeable specialists offering one-on-one support at no cost to families.
- MDA Summer Camp: Every year, children and young adults (ages 8-17) learn vital life skills and independence at the MDA summer camp, as well as other recreational programs at no cost to families.
- MDA Community Education: MDA provides resources and materials to educate the neuromuscular disease community about the fundamentals of neuromuscular disease, as well as topics like access to quality healthcare, education, employment, financial literacy and self-advocacy.
- Advocacy: MDA is dedicated to advocating for national policies and programs that support families with neuromuscular diseases by accelerating the development of therapies; facilitating early diagnosis and treatment from day one; ensuring access to critical healthcare and support; and promoting policies that promote independence, inclusion and equity for people living with disabilities.
How can people in the MG community get in touch with your advocacy organization’s leaders in their area so they can get involved?
They can visit our website, call the MDA resource center at 1-833-ASK-MDA1 (1-833-275-6321) or email ResourceCenter@mdausa.org to learn more about registering and getting involved with MDA.
What are ways that people can contribute to your advocacy organization? Do you have any urgent needs?
There are many ways to get involved with MDA, from volunteering to becoming an MDA advocate to participating in an event. We have an urgent need for volunteers and are always looking to grow our advocacy community. To learn more about how to get involved, please visit our website.
Raising awareness for myasthenia gravis
Does the Muscular Dystrophy Association host any annual events to raise awareness?
We host MDA Engage: Myasthenia Gravis Symposium each year. In 2022, the event was chaired by Dr. Gil Wolfe, MD, FAAN, and featured a variety of topics presented by experts in MG.
What is the most important message your advocacy organization has for someone who is living with MG?
You are not alone. MDA is a community and we can help individuals connect with others living with myasthenia gravis. MDA is advocating for the community—for better access to care, increased funding for biomedical research, accelerating therapy development, improving air travel and ending workplace discrimination. It is a time of great hope.
Is there a story you’d like to share about a time your advocacy organization went above and beyond for a member of the MG community?
MDA hosted a community roundtable discussion in 2020 to gain further insights directly from individuals living with MG on their experiences. From the roundtable discussion, MDA took action in two ways: First, we created the ER Alert Card for MG based on feedback we heard about preparing for emergencies and educating EMS about MG. Second, we facilitated a survey of the MG community on the financial strain of living with MG. The results of that survey are being published and will be available to share at a later date.
How have the needs of the Muscular Dystrophy Association and its members changed over time?
When MDA was first established, there were no treatments for individuals living with neuromuscular diseases like myasthenia gravis. MDA has been a pioneer in neuromuscular research, investing over $1 billion since inception, with $56 million focused on MG research.
With more clinical trials and approved treatments than ever before, the needs of the neuromuscular disease community have changed. Needs are now focused on access to those clinical trials and treatments as well as education around and preparation for potential new therapies. Individuals are now living longer and stronger, and they need support and resources to access higher education, employment and independent living.
What is one thing that makes your advocacy organization stand out?
By raising a collective voice for all neuromuscular diseases, we believe we are able to move the needle forward faster. Research and discovery across one disease often translate to discoveries and therapy development in other diseases. In addition to sponsoring over $1 billion in neuromuscular disease research, MDA supports a network of care centers across the U.S. staffed by neuromuscular experts, including experts in myasthenia gravis. Because of our close relationship with these care centers, we can ensure that the clinic teams are always up to date on the latest care and treatment options for MG and other neuromuscular conditions.
Is there anything you wish more people knew about the Muscular Dystrophy Association?
The Muscular Dystrophy Association has been at the forefront of leading change and advocating for people living with neuromuscular diseases. Our mission is ensuring the people we serve live longer, more independent lives. MDA will continue to break down barriers by providing the resources necessary to ensure our community has the same access to personal freedoms and independence so they can embrace all that life has to offer.