FOR THE COMMUNITY
Advocacy Organizations that Serve the Myasthenia Gravis Community
Discover some of the organizations dedicated to providing support to the myasthenia gravis (MG) community.
Patient advocacy organizations can be a welcome resource for people living with myasthenia gravis. These organizations can help people with MG, their caregivers and loved ones find support groups, access educational materials about MG and bring the community together. Often, these organizations are created in a local setting by people whose lives have been directly affected by MG. From small beginnings, some of these organizations have grown into large communities made up of people facing the same challenges as one other. If you’re interested in getting involved, this list of advocacy organizations may be a good place to start.
Below you'll find some information the advocacy organizations provided about themselves for the MG community.
The Caregiver Action Network (CAN) prides themselves on their mission to help the people who devote their lives to caring for loved ones with chronic conditions, diseases, disabilities and the effects of old age. The CAN is a nonprofit organization that provides resources and education so that family caregivers can get necessary support.
In 1972, a grassroots organization of patients, family members and physicians formed in Illinois to help people who were living with MG achieve the best possible quality of life. Its founders wanted local patients to communicate with each other and stay up to date on all available information. Today, Conquer MG, formerly known as the Myasthenia Gravis Foundation of Illinois, provides in-person services to patients living in Illinois, northwest Indiana and southeast Wisconsin, and delivers virtual MG resources to a national audience.
The EveryLife Foundation for Rare Diseases is a nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. The Foundation can provide the training, education, resources and opportunities for rare disease patients, caregivers and others impacted by rare disease to make their voices heard. Since its founding in 2009, the Foundation has engaged thousands of rare disease advocates through its programs and events and has coalesced support that has resulted in the successful passage of key legislation with bipartisan support.
In 1950, Paul Cohen, who was living with muscular dystrophy, gathered a group of people who all had a connection to his condition and urged the group to raise funds to aid in finding a cure. The group was so motivated that it started the Muscular Dystrophy Association (MDA). Today, the MDA can provide education and services, including neurologists who specialize in MG and one-on-one support, for people living with MG. The MDA has more than 150 Care Center Networks that are partnered with top healthcare institutions across the country to help provide services to people living with neuromuscular diseases.
In 1954, Joan Stackhouse and her husband were on a missionary trip in West Africa—Joan became ill and was diagnosed with myasthenia gravis. Shortly after, the couple moved to Kansas and formed a local association with the help of a pastor, his wife and other church parishioners. Today, the MGA is committed to serving people who live with myasthenia gravis in Kansas, Missouri and northwest Arkansas.
The Myasthenia Gravis Association of Western Pennsylvania helps to address the medical, social and emotional needs of all people affected by myasthenia gravis. The MGA of Western Pennsylvania’s vision is to ensure the best quality of life for everyone who lives with MG and they provide educational materials to the MG community, the medical community and the general public. Using donations from the public, the MGA of Western Pennsylvania serves over 500 MG patients and their families every year.
In 1952, Jane Ellsworth’s daughter, Pat, was diagnosed with myasthenia gravis. Jane had a hard time finding information about the disease. She formed the Myasthenia Gravis Foundation of America (MGFA) so that a group would exist whose mission was to do whatever it takes to find a cure for MG. Today, the MGFA continues to help patients and their families find resources and support systems that better allow patients to live with MG.
In 1975, a few myasthenia gravis patients in the Grand Rapids, MI, area who had come to know each other decided to form a local support group that would educate patients, their family members and the public about MG. It was important to the group that medical professionals become more aware of the rare disease, and the group wanted to support research to find new treatment options for the community. Though originally chartered through the Myasthenia Gravis Foundation of America (MGFA), today the Myasthenia Gravis Foundation of Michigan is a state-approved nonprofit organization that continues to support its members.
The Myasthenia Gravis Holistic Society empowers adults living with MG to manage their disease by focusing on holistic and lifestyle changes to enhance overall wellness. The Myasthenia Gravis Holistic Society provides an inclusive and diverse community, disease management roadmaps, expert and patient advice, wellness resources and retreats for people living with MG and their caregivers.
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