My Nonprofit Reviews

I’ve had dermatomyositis for over 24 years. It took me 8 years to be diagnosed from the acute onset. It took me another 8 years to learn about any kind of support community for people who had the same disease. I found that in two FB groups. One of those groups was headed by Jerry Williams (later to become MSU). As I was in the process of publishing a book about living with DM I contacted him to see if I could be of service, because I knew how isolating the process of diagnosis and living with a rare disease was. We quickly found that our desires: to help others to not feel alone with this dreadful disease and to educate and support others - were aligned. He asked me to help him and Sandy with the support groups, and later to help start the non-profit. It has been one of the greatest pleasures and honors of my life to see this group blossom into a wonderful resource for a previously underserved population. I am so proud of all that this organization has accomplished. As a patient, I still go to the groups for support and my own health questions, as well as to share new adaptive advice I’ve gleaned along the way. There is strength in numbers and experience. I can tell you that this organization continues to help all of us, even those who volunteer.