Angelman Today September / October edition 2013

------------------------------------------------------------------------------------------------------------------- ASSERT continued – In 2014 we will be holding our 8th biennial conference. These conferences are an amazing source of information and support for our families and they are looked forward to by families and trustee’s alike. 2014 will also be ASSERT’s 21st Birthday. During those 21 years we are extremely proud to have supported many families and carers with their roles of caring for loved ones with Angelman Syndrome. 2015 will be the 50th anniversary of the discovery of Angelman Syndrome. In those 50 years tremendous strides have been made by scientists and researchers both in the UK and internationally. We will be forever grateful to those professionals who have made it their mission in life to help further our understanding of this condition and who are looking for ways to improve the lives of our loved ones. We are thrilled to present “Lite the Night on FIRE to benefit FAST” in Boston, MA on Friday, Sept. 27th at Hotel Commonwealth from 7-11pm. This first of its kind event in New England will feature a silent auction, live band (Fusion), and unique feature of the night that will aim to illuminate the room in research donations. Glow wands are available for purchase online at http://www.firstgiving.com/fundraiser/daniellepinders/litethenighto nfireabenefitforfast for those unable to attend but still interested in being a part of this memorable experience . Event tickets are available at CureAngelman.org for $75 per person. Event emcee, AJ Crozby from radio station 92.5 The River, Boston. Guest speakers include: •Paula Evans-Founder and Chairperson of FAST •Becky Burdine-FAST Chief Science Officer Research suggests that a cure for Angelman Syndrome is within reach. FAST has a clear, direct plan to accomplish this goal through the funding of the FIRE Project. The only thing standing between individuals with Angelman Syndrome and a cure is the money needed for scientific research. The FAST Integrative Research Environment (FIRE) is a coordinated consortium of leading researchers working together to identify, characterize and implement new therapeutics for the treatment and ultimate cure of AS. The four inaugural researchers and Angelman experts (Anne Anderson, M.D., Baylor College of Medicine and Director of the Epilepsy Monitoring Unit of Texas Children's Hospital, Scott Dindot, Ph.D, Texas A&M University, David Segal, Ph.D, University of California Davis, Edwin Weeber, Ph.D., University of South Florida) bring unique expertise and perspectives to this endeavor ensuring results are brought from bench to bedside in the most efficient and cost effective time-frame possible. Join us and be a part of the miracle! For more information about Lite the Night on FIRE, please visit CureAngelman.org or reach out to one of the event planners below. Event Organizers, Danielle Pinders Judy Swanton Amy Girouard September / October 2013 WWW.ANGELMANTODAY.COM

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