The projects and organizations listed below demonstrate similar values and missions as NMD United, and have inspired our work within the neuromuscular disability community. They inspire us because they are:

1. Peer led and run.

2. Following the social-model approach to disability rather than the medical model.

3. Not seeking to "cure" the "problem" of disability.

4. Not raising money by using language that promotes stereotypes, stigma, and misinformation about the quality of a lived experience with disabilities.

Portlight Inclusive Disaster Strategies

Portlight Strategies, Inc. is a 501(c)(3) organization, founded in 1997 to facilitate a variety of projects involving people with disabilities, including post-disaster relief work. Portlight's longest running disaster recovery effort followed the devastation of Superstorm Sandy in the shore communities of New Jersey and parts of New York City, and lasted for 18 months. During that time, we replaced lost durable medical equipment and ramping, and assisted residents in purchasing and installing accessibility equipment that was made necessary after their homes were elevated to meet federal flood insurance requirements. 


Through ongoing programs like our Getting It Right conferences, we are working to promote self-determination of needs and issues with respect to disaster preparedness and response. We foster community relationships with these agencies to promote inclusiveness in disaster preparedness and response plans and to demand provisions for transportation and shelter accessibility. 

DMD Pathfinders

DMD Pathfinders is a user-led organisation which promotes choice and control and quality of life for teenagers and adults with Duchenne Muscular Dystrophy. It campaigns for improved standards of health and social care and provides advice, guidance and support to teenagers and adults with Duchenne Muscular Dystrophy on issues such as independent living, housing, employment and welfare rights.

Project: Disability Visibility Project

From the website: "The Disability Visibility Project (DVP)™ is an online community dedicated to recording, amplifying, and sharing disability stories and culture. The DVP is also a community partnership with StoryCorps, a national oral history organization. One individual, Alice Wong, runs the DVP (with the support of several volunteers). Our aim is to create disabled media that is intersectional, multi-modal, and cross-platform."

Organization: Not Dead Yet

From the website: "Not Dead Yet is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people. Not Dead Yet helps organize and articulate opposition to these practices based on secular social justice arguments. Not Dead Yet demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less."

Project: Project Value

From the Facebook page: "As we enter complex discussion in Canada about doctor-assisted suicide, we worry that Canadians are only getting one side of the disability story – that death is a natural choice for these poor suffering disabled people. But this story doesn’t speak to the experiences of many with disabilities.


This project seeks to explore a different perspective; to share stories and experiences that contradict the narrative that disability is a fate worse than death.


This is about projecting our value."

Organization: ADAPT

From the website: "ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom. "

Project: #CripTheVote

From the Facebook page: "#CripTheVote is a nonpartisan campaign to engage both voters and politicians in a productive discussion about disability issues in the United States with the hope that disability takes on greater prominence within the American political landscape.

While #CripTheVote is a nonpartisan project, we understand that many people have already developed preferences for particular candidates. This is great–we only ask that everyone is respectful in their interactions with each other. Our primary focus here is on increasing engagement with disability issues as a part of American politics and on the need for that we are all in agreement!"

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