Robert Miller, Executive Director of the NFXF
I don’t need to tell you that Fragile X syndrome can have a big impact on families! But exactly what is that impact and what can be done to lessen the difficult aspects while creating the best environment for improvement and overall success? Answers to big questions like those are often found in cooperative projects involving professionals and families working together, gathering a lot of information and studying that information for patterns and similarities. The “Our Fragile X World” survey project is one example of that process. I am now pleased to tell you that the Centers for Disease Control (CDC), through its National Center on Birth Defects and Developmental Disabilities, has decided to continue its support of another example by funding the work of the Fragile X Clinical & Research Consortium (FXCRC) with a new, 2.2 million, four-year grant following a just-completed three-year grant.
The FXCRC, an organization initiated by the National Fragile X Foundation in 2006, is now comprised of 25 U.S. clinics and a growing number of international affiliates. Families visiting the U.S. clinics are given the opportunity to be part of the project and, as a result, to contribute to the growing understanding of the impact of the syndrome which, in turn, is leading to a growing understanding of when and how to best intervene.
Here are just a few of the things the FXCRC project will be looking at: hyperarousal and sensory issues, speech and communication, behavior, developmental assessments, family support, school progress, medication, sleep, medical and health problems, preventive health monitoring (height, weight, blood pressure, vision, hearing, nutrition, etc), and social participation (friends, community events, recreation, peer-age organizations).
The awarding of this grant is a real acknowledgement of the caring, commitment and hard work of the professionals who staff the clinics and conduct the research. You can learn more on our Announcements page, on our Clinics page or by visiting a Fragile X clinic.
Also, thanks to the 877 families who took the time to enroll in the Our Fragile X World enrollment challenge! Your willingness to participate will benefit the entire FX community as the surveys are completed and analyzed. AND, thanks to the success of the enrollment challenge, your participation “pays it forward” by allowing the NFXF to offer many more conference registration scholarships to the 13th International Fragile X Conference in Miami, Florida, next summer. Scholarship applications will be available on our website beginning February 1, 2012.