In 1985, I started experiencing numbness and motor deficiencies. Like many people, I was tested, and then undiagnosed . Maybe it was multiple sclerosis… but I was not heat sensitive – in fact I loved living in Florida and soaking in the hot tub – and it took 14 years for anything to show up on my MRIs.
I was eventually diagnosed with MS. With ongoing treatment and attention to my overall health, I was able to keep working – as a university professor, teacher and researcher – through my partial retirement and move to the Washington, D.C., area in 2004. My left leg doesn’t work very well, so for walking any distance or in a crowd I use crutches – or I fall down. That’s one nice thing about D.C.: there’s always a crowd to offer help if I fall. Also, the D.C. region is where decisions are made about state and federal funding. And as an MS activist, I like having a say in these decisions.
My schooling is in medical science, and I’ve done pharmacology, physiology and more. Because I worked at a health center I also lectured in the dental, veterinary and nursing schools. So when I heard about the United States Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) “consumer reviewer” position six years ago, I applied. I had reviewed grants as part of my profession, and this “consumer” review was something I wanted to do as a person with MS – in addition to hopefully providing input from a professional perspective and getting back into discussion circles with my former colleagues.
The CDMRP gets 30-40 MS research proposals/applications each year, but under current budgets they can only fund five or six. The program specifically encourages research that addresses critical needs of the MS community – like prevention, earlier detection, and new treatments for MS – but of course research proposals/applications are written at a scientific level. For each assigned application, I prepare written critiques on how the proposed research addresses the MS community's needs and concerns. We often do a multi-day meeting where, as a PhD in the field, I can say “the elegance of this proposal is seductive” (if it is), and as a person with MS I can say “but the outcome is not going to make a difference for me” (if that’s true). I bring unique experience – perspective both as “consumer” living with MS, and as a seasoned member of the scientific community. The scientific review lets me apply my education and experience, and at the end of the day, I take off my science hat and think about it personally: will this research change my life?
Through my various roles – “consumer” reviewer, scientific reviewer, MS activist, Virginia Government Relations Committee member – I can see that we have come a long way. However, there is still work to be done: we cannot stop until we have a cure for MS. The MS CDMRP and the research it funds could help us reach this goal. CDMRP funding is decided annually, and I’m excited to report that MS activists like me have spurred possible doubling of funding next year!
Join me. Bring your perspective – as a person with MS or someone who cares about MS – to advocacy, research and more. Become an MS activist today.