Video presentations available
The SP Foundation in the USA held their annual conference in St. Louis, Missouri in June 2013. The speakers’ video presentations are described below and available to view at: http://www.sp-foundation.org/reflections-from-the-st-louis-ac/
Dr. Kirsten Tulchin-Francis and Dr. Jonathan Rios from Texas Scottish Rite Hospital speak about the work they do with HSP children, including their gait lab work. (31:09)
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Dr. James McNew of Rice University in Houston, TX is a protein biochemist. He explains the biochemistry of HSP and more specifically, of SPG3A (Atlastin) and SPG12 (Reticulon2). (21:48)
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Rebecca Hart, Keynote Speaker, is a five-time USEF National Para-Olympic Equestrian Champion and two-time Para-Olympian in Equestrian Dressage (Beijing 2008 and London 2012). Rebecca gives a spirited and inspirational presentation on how she decided to play the cards she was dealt and not let her condition define her. Rebecca had never met any other HSPers besides her own family members, until this SPF conference where she was keynote speaker.
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Dr. John Fink from the University of Michigan and the SPF’s Medical Adviser speaks about the advancement in the rate of HSP research and the framework for treatment of HSP. (53:28)
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Dr. James Berry from Massachusetts General Hospital spoke about the collaboration between SPF and NEALS (North East ALS Consortium) including therapy development, biomarker discovery, upper motor neuron disease registry and more. (30:11)
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Karen Prior Bernard, wife of Allen Bernard (SPF Board Member) and mother of a 5 year old with HSP, tells of the emotions involved in misdiagnosis and eventually learning more about and dealing with HSP. (12:58)