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In 1987, Philip Posner, Ph.D., was teaching neuroscience and running a laboratory when he began experiencing the fatigue and loss of function in his sensory nerves that would eventually be diagnosed as multiple sclerosis (MS). The early symptoms were easy to manage, but as hand tremors developed over the years, his laboratory work, involving precise placement of sensitive electrodes, became difficult. He turned routine laboratory work over to graduate students and postdoctoral fellows, transitioned to a mentoring role, and eventually moved to a different university to head a department. After an MRI in 1999 showed lesions, he began disease modifying therapy (DMT) with Avonex®. This has dramatically reduced the number of relapses he experiences per year.
Phil retired in 2004, only to launch his next career as a volunteer working to improve the lives of people with MS and other disabilities. He serves on the Government Relations Committee for the National Multiple Sclerosis Society (NMSS), lobbying both in Virginia and on Capitol Hill for legislation that will positively impact the elderly and people with disabilities. He participates in NMSS outreach programs that provide information and support to people with MS. He is an Ambassador for the Patient-Centered Outcome Research Institute (PCORI), serving on several funding review panels, contributing to MS-related funding-policy decisions, and participating as a patient advisor to the Care-Align Project, co-funded by PCORI and the Hartford Foundation. He works with the Food & Drug Administration (FDA) as a patient representative and as needed on various FDA Drug and Device Advisory Panels. He has been vice chair of the Washington Metropolitan Area Transit Authority (WMATA) Accessibility Advisory Committee, which advises the WMATA Board on transportation issues that affect the elderly and people with disabilities. He lobbies for improved federal funding for research as well as for the American Heart Association and the Society for Neuroscience and for programs like the NIH, FDA and CDMRP.
He first learned about CMDRP while attending an NMSS conference. Impressed with CDMRP's presentation, and realizing how useful his neuroscience background and disease experience could be, Phil decided to get involved. He met with the CDMRP director, applied to be a reviewer, and has participated in autoimmune disorder review panels nearly every year since that meeting. He enjoys working with the panels, each a diverse group comprised of patients, scientists, and clinicians, all of whom contribute to robust reviews and discussions and learning from each other as they go along.
Phil is encouraged by the resources and commitment going toward understanding the pathogenesis of MS and improving the lives of people with MS. At the time of his original diagnosis, the treatment options were rest or steroid infusion. Today he sees an absolute "armamentarium" of DMT options available.
Phil and his wife, Carol, love traveling and enjoy the concerts, museums, theater, and lectures of the vibrant Washington D.C. cultural scene. His favorite time, though, is his weekly volunteer day at the Library of Congress information desk. There he meets and chats with visitors of all ages from all over the world. He relishes this kind of intellectual reward that comes with volunteering and encourages anyone who has the time and energy to get out there and participate as a volunteer and advocate. Reflecting upon the unique experiences and skills each person has to contribute to others' lives, he also acknowledges the "karmic" returns: "It is good to do good things".
Last updated Tuesday, September 15, 2020