The International Fragile X Research Alliance

Please join us in establishing an informal international fragile X affiliation for organizations around the world that are dedicated to research for a cure for fragile X. This affiliation will be called the International Fragile X Research Alliance and will serve as a mechanism to support collaboration, conversation and dialogue among all those working at all levels on a cure for fragile X.

Conquer Fragile X Foundation is a not-for-profit organization, based in Palm Beach, Florida, USA. This foundation focuses entirely on funding research INTERNATIONALLY for a cure or treatment for fragile X. In our work with fragile X funding organizations and with researchers around the globe, we have become aware of the need for an international support structure for fragile X investigators and other seeking a cure. Membership in this Alliance will NOT represent a financial obligation of any kind. Membership is encouraged only for organizations whose mission is basic scientific research for a cure for fragile X.

As a basic offering to International Alliance members, Conquer Fragile X has established a link at this website to HistCite, a compilation of published fragile X research and other documents made available to CFXF by the developer of HistCite, Dr. Eugene Garfield. These works are available in a number of languages and represent the significant body of published work in fragile X. We offer this to the International Alliance and invite all member organizations to link to HistCite and www.CFXF.org at their sites. In addition to the HistCite link, CFXF will also sponsor a member page and a bulletin board page for members to post and share important research-related information. The first item on the bulletin board is the brand new, exciting research program entitled, “Shared Neurobiology of Fragile X Syndrome and Autism”. This collaborative project has international sponsors in Ireland and Canada, US Government funding and is the first of its kind to study the shared fragile X/Autism pathway.

As you know, the fragile X community is very fortunate to be on the brink of some wonderful new advances in research. This is the result of years of effort in areas such as governmental action, social and community activism, fund raising and lots of excellent basic research. It is very important for those organizations and entities that are focused exclusively on finding a cure for fragile to come together in this International Alliance so that we can preserve the focus and energy toward a cure. We cannot let our focus on a cure become muddled or compromised by treatment-related endeavors. There are many activities that are critically important to the fragile X community, but will not lead to a cure. Together, those of us focused on a cure can influence the agenda of research around the world to invest in research for a cure and not merely a treatment.

If you are interested in being listed at our International Alliance Members page, please email me with the appropriate link and a line or two of descriptive information about your organization, along with your logo, if you wish. We hope that you will be interested in joining with us to establish this Alliance to support fragile X researchers throughout the world. If you have any questions, please contact me, Karen Fay, Executive Director of CFXF at fay@cfxf.org.

Thanks, and I look forward to hearing from you soon.



 

 
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