HD Insights™

Vol. 9 - Winter 2014

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HD Insights A H u n t i n g t o n d i s e a s e r e s e a r c h Issue N o 9 -- Winter 2014 p e r i o d i c a l TM Copyright © Huntington Study Group 2014. All rights reserved. Meet the Compound RP103 (Cysteamine bitartrate delayed- release) for HD. Page 14 Research Round-Up Summaries of the papers selected as Insights of the Year 2013-2014 provide a glimpse of ongoing HD research.
 Pages 3-9 Highlights from EHDN 2014 Laura Clemens and Erik Jansson share the highlights of September's EHDN plenary meeting in Barcelona, Spain. Page 17 Meet the CEO, Meet the Company CEO (designate) Julie Smith of Raptor Pharmaceuticals discusses the promise of cysteamine in HD. Pages 12-13 Clinical Trials Update An up-to-date listing of upcoming, ongoing, and recently concluded clinical trials in HD. Pages 10-11 Dr. Ira Shoulson has been a driving force in HD research and discovery since the late 1970s. He founded the Parkinson Study Group (PSG) in 1985 and the Huntington Study Group (HSG) in 1994, both groundbreaking research networks for clinical trials in Parkinson disease and HD. He was the Louis C. Lasagna Professor of Experimental Therapeutics, and Professor of Neurology, Pharmacology and Medicine at the University of Rochester School of Medicine in Rochester, New York from 1990 to 2011, and Chair of the HSG from 1996-2014. Dr. Shoulson recently shared his journey and his hopes for the future of HD research with HD Insights. Beginning on page 2 is an edited transcript of the conversation. VITAL SIGNS NAME: Ira Shoulson, MD POSITION: Professor of Neurology, Pharmacology and Human Science; Director, Program for Regulatory Science and Medicine (PRSM); Principal Investigator, FDA-Georgetown Center of Excellence in Regulatory Science and Innovation (CERSI), Georgetown University, Washington, DC EDUCATION: MD, Internal Medicine residency (1971–73), Neurology residency (1975–77), Chief Resident in Medicine and Neurology (1977–78), University of Rochester School of Medicine and Dentistry; Experimental Therapeutics Fellowship (1973–75), National Institutes of Health, Bethesda, MD HOBBIES: Traveling, exercising, and spending time with his young grandson Dr. Ira Shoulson Meet the Founder HD Insights, Vol. 9 1

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