A true grassroots organization, 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 realized that many of the socialization and support groups focused mostly on children and their parents. Adults with neuromuscular disabilities (NMDs) face new challenges and craved open discussion with peers.

 

In 2012, Alexandra Landis and Emily Wolinsky, who met through an online support group, started discussions about developing an official 501(c)(3) for and run by the virtual community with which they were so deeply connected. Alex, at 25 years of age, was in the process of building her first home. Emily, nearly ten years her senior, was a Project Director for the Texas State Independent Living Council and former English teacher. In their daily talks, Emily would dream up the crazy ideas and Alex would make them happen.

 

Both women quickly realized that no other non-profit organization in the United States, which focused on neuromuscular disabilities (NMDs), was entirely peer-led and run by the people it set to serve. Alex and Emily also realized that many organizations were driven by the medical model of disability rather than the social model, a model that embraces the present day and strives to change society’s perception and stigma regarding life with a disability. NMD United would be a unique voice desperately needed by thousands of adults around the world. Within a few months, the two recruited a core team of three other highly skilled and successful adults with neuromuscular disabilities to help realize their vision. The team worked together in this development phase for the next eighteen months.

 

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. NMD United also coordinated its first local chapter in Austin, Texas, which continues to meet monthly. Despite being in the still very early stages of development, students at Harvard University chose to focus on NMD United as part of a class project and donated to the organization.

 

Nearly one year after NMD United’s first board meeting, when Alex was voted in as Treasurer, NMD United experienced a devastating setback and loss. Alex died suddenly and far too soon on Sunday, June 28, 2015. Emily’s "right hand woman" was gone, and all who knew Alex suddenly understood all that she gave to NMD United. Emily and the Board of Directors vowed to keep NMD United alive because Alex wouldn’t have tolerated anything less. Within the next year, the organization hosted and recorded more virtual discussions, formed an Atlanta, Georgia chapter, and started two major projects: the nationally and internationally recognized Dear Julianna letter writing campaign; and the Alex Landis Empowerment Fund (ALEF), which launched in June 2016 to provide grant monies to adults with NMD in support of various independent living costs.

 

Today, with nearly 2,000 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.