Picking ourselves up, dusting ourselves off

After Alex Landis died I was an absolute disaster. You see, we started this non-profit organization together in 2013 called NMD United. We talked nearly everyday about it and in the short, 2.5 years, of our friendship, the ideas we had for this organization, which focuses on serving adults with neuromuscular disabilities, could not stop forming. Alex handled the nuts and bolts; I was mostly just nuts, constantly calling her up and presenting new goals for NMD United that she never said no or wait to. One of the biggest jobs Alex had was designing and maintaining our website. After Alex, suddenly and tragically died a little over a year ago, NMD United's board was left to pick up many pieces without our right hand. One of those crucial pieces was our website.

Because I have a full-time job and am super busy, I honestly just kind of let the website sit for a while. I had too many other priorities and I figured if it ain't broke, don't fix it. Then, sometime around March, TK Small phoned me one day and said, "Hey Em? I think the website's down." Not only was our website broke, Jason Tweed said that we lost the entire thing and would most likely have to rebuild it from scratch. Jason put up a landing page and we set a deadline to rebuild NMD United's site by this summer.

Weeks went by and life got hectic for all of us. Our entire working Board of Directors juggles jobs, our PCA care management, our personal relationships, and our health. Time flew and then another tragedy struck.Greg Smith, our good friend and NMD United board member died earlier this summer after months and months of illness. Once again, we were sent into a tailspin.

But just like Alex and Greg would have demanded, T.K., Lorinda Gonzalez,Jeffery Hoffman, Maria Sotnikova, Jason, and I picked ourselves up, dusted ourselves off, and pushed on. We pushed on because we know that NMD United probably one of the most important and needed organizations for a community that has grown to over 1000 members.

A few Sundays ago, I wheeled up to my desk and started creating NMD United's new website. I channelled Alex for her design skills, and Greg's promotional and writing talents, and consulted with NMD United members who could offer constructive criticism, like Kareen Zeitounzian, Kendra Scalia, and Ali Kittylegs Ramos. I spent hours and hours working on it, and finally this labor of love was ready to publish on the night of Alex's birthday - just a few weeks before her family's 5K fundraiser would take place dedicated to honoring Alex and her legacy. The website finally launched late Friday night after Jason figured out a technical glitch.

I'm really proud of NMD United's new website and feel that Alex and Greg would be proud of it too. NMD United is a small organization right now, but we have big plans. We don't have the budget of the Muscular Dystrophy Association or other organizations that focus on curing and fixing us. We don't use language like "terminally ill" or "devastating muscle-wasting disease" to garner sympathy from our supporters. Rather we use language that focuses on our "lifelong disabilities" and our mission to connect and empower our community of adults with NMDs to live their lives as fully and happily as possible in the present moment - just as we are. We don't need outside sympathy for what we can't do, we need support for all the things we can and want to do.

Finally, I'm proud of the website because it reflects our goal to keep NMD United peer-led and run. Unlike many disability organizations, our board completely "gets it" and understands the needs of our community in ways that MDA or other organizations led and run by people without neuromuscular disabilities do not. We also believe that our strength and potential as an organization exists within a fantastic and vibrant community overflowing with talent, brilliance, spunk, and motivation to erase stigma and change perspectives on living life with a lifelong neuromuscular disability. We are essentially taking charge of and rewriting a new and much more positive narrative.

So, check out www.nmdunited.org today. Read through the pages of the website. Subscribe to our mailing list. Donate to our projects, like the Alex Landis Emergency Fun. Shoot us a message of encouragement. Share the website with your networks. Do any and/or all of the above because this organization and the adults with neuromuscular disabilities who volunteer their asses off for it deserve your support.