I am a multiple Rare Disease EPatient, International Rare Disease Patient and Healthcare Activist, Lobbyist, and Clinical Research Adviser. My professional and education background is in Managed Healthcare. I enjoy getting to know as many SPM Members as possible. This year, I am a SPM Board Member at Large. All of these tasks keep me busy, but I always find time to be a Mother to an adult daughter, and two mischievous Shih Tzu's -Lola Trixie Belle and Jolene Stella Blue. Yes, we love music. "Shockingly," I have also been told that people can tell where I am from when I speak. I am from Southwestern Virginia, and have lived in Richmond, Virginia for the majority of my adult life, so I may have a tiny southern accent. In 2005 I had to have emergency brain and totally rebuilt cspine surgeries. My CSF had been completely blocked for a substantial time. The blockage and surgeries left me with several lasting side effects. If I speak or write oddly please understand it is not on purpose.I have learned that is just part of the new me.
In all sincerity, I love SPM, the SPM-Connect Forum, and working to advance Participatory Medicine. Please consider getting involved with a SPM project or join a committee. It is very rewarding and you get to meet and work with the best people not only in the US but Internationally.