Fragile X - Fragile X Syndrome - Mental Retardation - Genetic Defects - Autism - Learning Disabilities - Medical Research In Israel


	Harris Hollin Founder, CFXF Emeritus Director, NFXF

PUBLISHED FOR FRIENDS OF CONQUER FRAGILE X FOUNDATION
Summer 2003 Newsletter
MESSAGE FROM THE PRESIDENT All of us in the fragile X community are very happy that the National Institutes of Health, with a mandate by the Children's Health Act of 2000, recently invested $3,248,780 in three new Fragile X Research Centers. All of us who work to cure fragile X, all our families and our scientists are thrilled at what these new centers will mean - a ³hub² for fragile X research. New treatments will emerge from the work done at these centers. Focused studies will provide insights into the development and management of the disorder in target populations. New academic approaches that will maximize the skills of our children will be implemented in our schools. And, it all will bring us one step closer to that for which we all strive, a cure for fragile X. As our families and others affected by fragile X continue to meet and share information, the new Centers will play a pivotal role in developing new strategies to help manage issues such as school, work and social settings. Already, programs such as the one at UNC (see the article on page 2) have emerged as part of the new Centers. CFXF is dedicated to bringing outstanding international research into the mainstream of fragile X research. We continue our search for new and exciting projects as well as approaches to energize the research, keeping it vibrant and dynamic. Our approach remains one that fosters cooperation and collaboration among scientists whenever possible. In the past few months three outstanding examples of collaborative fragile X research have developed through our efforts, and we are delighted. We are happy to celebrate in this issue, the charity of one of our Directors, Mr. Arthur Rosenberg. Through his work with AirLifeline, Mr. Rosenberg donates so much of himself to help critically ill. Yet, he tells us that he benefits as much by the gift as any of those he helps. Please be sure to read the article on page 3. I thank you for your kind support throughout the year. I hope that you will continue to remember CFXF with your donations, and be assured that your gift will support research that will someday lead us to a cure for fragile X, the leading known cause of mental retardation. Harris Hollin President	The Boorys Host Their Third New Jersey Fundraiser On May 15, 2003, Cure Fragile X Foundation founders, Eric and Elissa Boory of Cherry Hill, New Jersey, held their third fundraiser for Fragile X Syndrome at The Mansion in Voorhees, NJ. Over 400 people attended the event which included cocktails, buffet, dinner, raffle, silent, fishermans and live auctions. Dr. Paul Hagerman of the M.I.N.D. Institute of the University of California at Davis updated the crowd on his latest research efforts. Also in attendance were Louise Gane, M.S. of the M.I.N.D. Institute, Robbie Miller from the National Fragile X Foundation, Harris and Sande Hollin of Conquer Fragile X Foundation and Jennifer Keenan from the Fragile X Association of New Jersey. An executive board of ten, along with seventy-five event committee members worked diligently for over a year to help make this a very successful event. One of the most popular categories for bidding was travel. This category included trips to Italy, Hawaii, Bermuda, Dominican Republic, Canada, Utah, California, Disney World, New York City and a 7-day Mediterranean Seabourn Cruise. Other hot prizes featured a private dinner by a famous TV chef in your own home, unique sports memorabilia and fabulous restaurant packages. The event was a huge success netting $210,000, and additional contributions are still arriving. The money will be distributed to the following organizations: The M.I.N.D. Institute, National Fragile X Foundation, Conquer Fragile X Foundation and FRAXA. The Boorys have three children, Alex, 11, Sydney, 6, and 8 year old Seth, who has Fragile X Syndrome. We are very grateful to this energetic couple and all those who worked so hard to help make this fundraiser a great success.
NIH Awards Three Fragile X Research Centers
In early April, NIH made the long awaited announcement of the results of the competition for the three Fragile X Research Centers authorized in the Children's Health Act of 2000. The Centers were funded with $3,248,780 for the first year. The competitive awards were made to: Dr. Don Bailey at the University of North Carolina Dr. Charles Laird at the University of Washington Dr. David Nelson at Baylor College of Medicine In the coming years, these centers will represent the core of fragile X research in the United States. With its commitment to international fragile X research, CFXF will look for many more opportunities for collaboration and cooperation among the scientists at these new centers and among fragile X researchers around the world. The introduction of projects and scientists from abroad into the mainstream of US domestic fragile X research will help keep fragile X research vibrant and dynamic. Congratulations to all those who worked long and hard to prepare and present a variety of interesting and competitive proposals! And the best of luck to the winners!
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Harris Hollin, Founder ~ Karen Fay, Past President
PO Box 37 ~ Walnut Creek, CA 94597
Tel: 925-938-9300 x1
Fax: 925-938-9315
Email:natlfx@fragilex.org
Web: www.fragilex.org

NFXF is a not-for-profit tax exempt 501c3 organization
Tax ID No 84-0960471
CFXF is a not-for-profit tax exempt 501c3 organization
Tax ID No 65-0910605