CFXF JOINS THE COALITION FOR CHILDREN'S HEALTH

After years of diligent hard work on the part of Children's Heath representatives all over the country, including CFXF, Congress passed the Children's Health Act in 2000. As predicted, passage of the Act has had a profound and very positive affect on the public funding and organization of Foundation X research in the U.S. This powerful new resource has made it necessary for foundations such as CFXF to organize so our voices can be heard and priorities reflected as the Act is implemented and resources are allocated in research centers throughout the country. The Coalition for Children’s Heath, an affiliation of a number of children’s health organizations, including Fraxa Research Foundation, National Fragile X Foundation and the Arthritis Foundation, among others was created to provide just such a collective forum. In July, Conquer Fragile X was proud to join the Coalition and its members in the on-going process of informing Congress and ensuring that the issues surrounding Children’s Health remain a priority.

Membership in the Coalition will expand the influence of CFXF by:

· Providing momentum, pressure, and visibility to ensure continued support for fragile X related initiatives.
· Allowing more frequent, structured access to key health care officials in the Administration and Congress.
· Monitoring to ensure successful implementation and funding of the Children’s Health Act of 2000
· Facilitating ongoing collaboration and networking opportunities among Coalition members and external partners
· Maximizing individual resources to jointly achieve an array of strategic objectives.

Two particular aspects of the Act are critical to Conquer Fragile X and its mission. First, Title II of the Act authorizes the National Institutes of Health to establish at least three Fragile X Research Centers of Excellence. These centers, to be chosen through a competitive process, will be the focus of NIH-sponsored fragile X resources. Additionally, the bill creates Pediatric Research Loan Repayment Program to encourage promising young researchers to enter the field of fragile X research and other pediatric health specialties. The competitive process for the selection of the Fragile X Centers of Excellence is scheduled to begin in November, with funding to the centers in December of 2002. We look for the Loan Program to provide options for young, energetic research4rs to become involved in the search for a cure for fragile X

The independent work of Conquer Fragile X continues as we build creative collaborations between our partner researchers in Israel and around the world and investigators and centers in the United States. Our goal is to combine the knowledge abroad with these significant domestic resources, broaden the overall research base, and advance the entire body of research toward a cure for fragile X. With your continued support, we will soon have many more, rich, dynamic international research efforts underway.

We are thrilled to share the great news of one of our CFXF families. Jonathan Doring, the 21 year-old, fragile X affected son of CFXF Group Leader, Kathy Doring, has been selected by Chevrolet and the Salt Lake City Olympics Committee to be an Inspirational Torch Bearer in the Torch Relay for the Salt Lake City Winter Olympic Games He will run on

.December 8th or 9th in Dade County. Kathy nominated her son through Chevrolet. The nomination process included an essay and Kathy was required, in 100 words or less, to capture the essence of her very special son and the exceptional example he has been for others. And, he truly is exceptional!! Jonathan attends Palm Beach Community College, takes two computer classes and works part-time at the local Public grocery store. He is also a Special Olympics Athlete and a Global Messenger!! The essay must have been wonderful as Jonathan was selected form among many applicants. This exciting event will be a feature in the CFXF Winter 2002 Newsletter. Congratulations and best of luck to Jonathan and his family.

AGC OF PALM BEACH COUNTY DONATES TO CFXF

The Associated General Contractors of America, Palm Beach Chapter held a wonderfully successful benefit golf tournament recently and on October 11 presented Harris Hollin and Conquer Fragile X Foundation with a check for $9,858.00!! Our sincere thanks to the entire AGC membership and especially to Barkly Henderson, a CFXF Board of Advisors member, Executive Vice President of the Palm Beach County AGC and grandfather of a fragile X afflicted child. 100% of this contribution will be used to support fragile X research.

NEW JERSEY FUNDRAISER BENEFITS FRAGILE X RESEARCH

Friends of Conquer Fragile X, Elissa and Eric Boory of Cherry Hill, New Jersey recently hosted a gala fundraiser at The Mansion in Voorhees, New Jersey. The Boorys are parents of a seven-year-old son, Seth, diagnosed with fragile X at the age of 23 months.

The May 10, 2001 event was the second annual buffet dinner and silent auction hosted by the Boorys to benefit fragile X research. Included among over 400 guests were Paul Hagerman, M.D., and Ph.D. and Louise Gane, M.S. from the M.I.N.D. Institute, Robert Miller from the National Fragile X Foundation and Jennifer Keenan from the Fragile X Association of New Jersey and the National Fragile X Foundation. Among the wonderful items auctioned were a seven-day Caribbean cruise and a twelve-day Hawaiian dream vacation. The fundraiser was a tremendous success and raised over $200,000. The Boory family elected that the money be distributed to the following four major fragile X research organization: The M.I.N.D. Institute, the National Fragile X Foundation, Conquer Fragile X Foundation, and FRAXA Research Foundation.

Our sincere thanks to the Boory family for their outstanding efforts for fragile X research.