Dear Friends and Family - The 2008 Angelman Syndrome Foundation National Walk-A-Thon will be held on May 17th in 19 cities nationwide. Dave, Connor, Regan, Emily and myself will be walking to raise money for the Angelman Syndrome Foundation (ASF) whose mission is to advance the awareness and treatment of Angelman Syndrome through education and information, research, and support for individuals with Angelman Syndrome, their families and other concerned parties. As most of you know, our daughter Regan was diagnosed with Angelman Syndrome (AS) almost 3 years ago. Angelman Syndrome is a rare genetic disorder which leads to lifelong challenges. Most are unable to speak and have varied physical and cognitive challenges. Since AS is so rare (between 1,000 and 5,000 cases in the U.S. and Canada) there is little incentive for investments. Therefore, much of the funding for research, treatment and awareness comes from the efforts of those, like our family, who have been touched by it and who are blessed to have an "angel" in the lives. Funds received from the ASF National Walk-A-Thon have a tremendous impact on improving the lives of individuals with Angelman Syndrome (AS) and their families. In the past 12 months, there have been many exciting developments in the world of AS. The Foundation awarded nearly $1 million in scientific grants to support research into potential cures and treatment of Angelman Syndrome and the scientific community is excited about the many advances.
We know that there are many worthy causes which you support and that we all have to prioritize our philanthropic giving. However, if there is room in your giving plans, we ask that you consider sponsoring us for this year's walk. The easiest way to contribute is by visiting our website at http://www.firstgiving.com/regansensenich
We thank everyone for their continued support and friendship!
Jeanine, Dave, Connor, Regan and Emily
You can learn more about Angelman Syndrome and the ASF by visiting www.angelman.org.
We would also like to personally acknowledge and thank those who contributed offline. Thank you to Jim & Judy Boyle for their donation of $500 on 5/01/08. Thank you to Pat & Lou Dicerbo for their donation of $1,000 on 5/07/08. Thank you to Mary Shaw for her donation of $500 on 5/08/08. Thank you to Albert & Treasure Herman for their donation of $100 on 5/14/08. Thank you to Bruce & Meghan Donaldson for their donation of $50 on 5/15/08. Thank you to Caroline & Peter Striano for their donation of $100 on 5/12/08.Thank you to Tony & Sara Lotruglio for their donation of $100 on 5/12/08. Thank you to Agnes & Joe Savino for their donation of $200 on 5/09/08. Thank you to Barbara Stary for her contribution of $25 on 5/16/08. We greatly appreciate your support!
