A true grassroots organization, with an all-volunteer board of directors of peers living with NMDs, NMD United's origin began with the rise of social media. Members of an online group of adults with muscular dystrophy, spinal muscular atrophy, and other neuromuscular disabilities voiced frustrations that the majority of socialization and support groups available focused mostly on children and their parents. Adults with neuromuscular disabilities (NMDs) face new challenges and crave open discussion with peers.

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So in 2012, Alexandra Landis and Emily Wolinsky, who met through an online support group, started discussions about developing an official 501(c)(3) organization run by the virtual community with which they were so deeply connected. Within a few months, the two recruited a core team of three other highly skilled and successful peers with neuromuscular disabilities to help realize their vision. The team worked together in this development phase for the next eighteen months.

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After countless hours and many meetings, NMD United received tax exempt status as a 501(c)(3) in June 2014. A significant portion of its first year involved working with the Board of Directors to develop a larger online presence by hosting bi-monthly virtual discussions on various topics related to independent living. In 2016, NMD United established the Alex Landis Empowerment Fund (ALEF) in their founder's memory, which has provided over $100,000 small grants to adults with NMD in support of various independent living costs.

Today, with nearly 3,000 members of adults with neuromuscular disabilities, we are continuing to connect and create an organization based on a unique body of knowledge and experience about what it means to live with a neuromuscular disability. NMD United was created to capture and document what we as a community have learned while living with lifelong neuromuscular disabilities, to create a forum for continued support and growth driven by people with NMD for people with NMD.