NFXF Executive Director Robert Miller, parent and NFXF Director of Public Policy and Government Affairs Jeffrey Cohen and parent Tamaro Hudson just returned from a two-day meeting in Washington, DC where they helped update the National Institutes of Health (NIH) Research Plan for FXS and Associated Disorders. The meeting also involved Drs. Elizabeth Berry-Kravis, Randi Hagerman, Don Bailey, David Nelson, Stephanie Sherman and many other affiliated with the NFXF. Katie Clapp and Mike Tranfaglia of FRAXA Research Foundation also participated. The plan provides guidance to the NIH as they allocate Federal dollars for FX related research through the “RFA” process (Research For Applications).
Two key areas of discussion involved descriptions of and research on problems associated with the premutation that do not fit neatly into the FXTAS or FXPOI disorders, and the need for better outcome measurement tools for understanding the actual impact of anticipated new drug treatments. We’ll keep you posted as these discussions continue!
The NFXF public policy team will monitor the NIH’s implementation of the plan in the years to come and we will encourage them to keep the needs of families topmost in their decision making process.
The original plan was printed and put online by the NFXF in 2009. Once the updated plan is made available the NFXF will be doing something similar and we will alert the Fragile X community at that time.