WALNUT CREEK, Calif., Nov. 5 /PRNewswire-USNewswire/ -- Two nonprofit foundations devoted to the support, treatment and eventual cure of people affected by genetic conditions known collectively as "Fragile X" have agreed to a formal merger as of October 31, 2007. The California-based National Fragile X Foundation (NFXF) and Florida-based Conquer Fragile X Foundation (CFXF) will now join forces to bring vastly expanded services to the Fragile X community.
The agreement calls for the NFXF to add CFXF as an affiliate fundraising and research arm. Those activities have been a powerful focus for CFXF since its founding by Chairman Harris Hollin in 1999.
Working closely with Scripps Florida biomedical research institute, the CFXF sponsors an annual Fragile X Research Conference in Palm Beach, among many other activities. Those efforts are expected to continue and even gain momentum with the merger, given the NFXF's own research funding and its activities through nearly 50 state chapters. The biennial NFXF International Conference should also serve as a powerful complement to the CFXF Research Conference, increasing both fundraising resources and scientific collaboration in the effort to find better treatments and an eventual cure for Fragile X.
"There comes a point when you want to be more focused than ever on your primary goals, and then you look for some way to achieve that focus," said Hollin, who will now become a director emeritus of the NFXF.
"Raising funds to support scientific research has always been the bedrock of the Conquer Fragile X Foundation, and it has become obvious to me in recent years that we could be even more effective if we could reduce the administrative demands on our organization by affiliating with a larger partner. The NFXF has a solid infrastructure with a truly national scope. Their resources will allow CFXF not only to focus more on fundraising, but also to offer more support and education activities for the many parents who have always supported us. I'm personally looking forward to increasing my time in fundraising efforts that will continue to expand our scientific knowledge of Fragile X."
Since its inception in 1984, The National Fragile X Foundation has sought to be a comprehensive information and support resource for everyone in the Fragile X community, including individuals with Fragile X, their families, and the professionals who work with them. In recent years, the foundation has greatly increased its efforts to promote both legislative advocacy and research funding. The research component will become stronger again as the merger with CFXF takes effect.
"We've always admired the Conquer Fragile X Foundation as a valuable ally in helping to advance everyone's knowledge of Fragile X," said Robert Miller, NFXF executive director. "When the opportunity presented itself to formalize a relationship, our board of directors saw nothing but positives for all concerned.
Under terms of the agreement, eight members of CFXF's Board of Directors will join the existing 16 members of the NFXF Board of Directors, and CFXF President Karen Fay will become "Conquer Fragile X Programs Director" within the NFXF. Hollin will continue to operate from his twin bases in Palm Beach and Philadelphia as he concentrates on strengthening his Fragile X fundraising network along the eastern seaboard.
The term "Fragile X" is used to denote three conditions caused by a mutation in the Fragile X gene, which is located on the X chromosome. The conditions are:
-- Fragile X syndrome (FXS) -- The most common known cause of inherited
mental impairment, it can cause a variety of effects, from mild
learning disabilities to severe mental retardation. It affects more
boys than girls, and is almost always evident in childhood, when
children fail to meet usual developmental milestones.
-- Fragile X-associated tremor/ataxia syndrome (FXTAS) -- A condition
affecting premutation carriers (mostly males and in rare cases,
females) over age 50, causing balance, tremor and memory problems.
-- Fragile X-associated premature ovarian insufficiency (FXPOI) -- A
condition affecting premutation carriers characterized by early
menopause and its associated effects, sometimes appearing as early as
the teen years.
For more information about The National Fragile X Foundation, visit http://www.FragileX.org, or call 1-800-688-8765.
|SOURCE The National Fragile X Foundation|
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