My Nonprofit Reviews

I was diagnosed with Dermatomyositis in June 2015 after two weeks of intense diagnostics while becoming sicker and sicker and weaker and weaker. I had never even heard of this rare disease. Skimming through Facebook I stumbled on MSU’s page. It was a welcome treasure trove of information. They also sponsor regular video support meetings which allow us to meet with and chat with other patients. They sponsor on line seminars led by leading researchers in Myositis and Rheumatology and keep us up to date regarding clinical trials for new drugs and treatments. I have not required but they also provide financial assistance both information and actual financial aid for patients finding themselves in a temporary cash bind. Jerry Williams the Founder and President is also a patient and participated in leading most of these activities himself. My understanding is that no one at MSU is paid so all funds are directed to assisting and supporting members and participants.

This organization is far more than a support group. It has provided me invaluable technical and medical information from reputable, really the top sources in a field that is severely under researched. There are live webinars that cover many aspects of living with Myositis, drugs and treatments, physical therapy and living in a world that literally doesn't see our invisible disease most of the time. Jerry Williams is an incredible human being and a Polymyositis patient for many years, as the principal Founder, he still makes daily contributions and is continually improving the Facebook pages, The Inspire Site, and the MSU Homepage understandingmyositis.org to enrich the user experience and provide more and more support for patients. Most remarkable is that none of the staff and support workers are paid, which if you look at the web site you would never believe! I am thrilled to be a member (its been nearly four years now), and it's definitely a nonprofit worthy of your support. By the way, the picture is me in February 2016, when I was very debilitated, unable to walk, or swallow, and strapped into the wheelchair (to give you an idea of the condition of some of our members), after many months of treatment and therapy I am much better today, though I still suffer from the disease.