From the Executive Director Robert Miller
Advocacy Day is over – but our Public Policy effort continues: Twenty-three of the twenty-five Fragile X clinics have met – but the work of the Fragile X Clinical & Research Consortium is just beginning. We are fully immersed in planning the 13th International Fragile X Conference – while the impact of the 12th is still being felt. Some clinical trials are close to concluding while others are preparing to begin. In the world of Fragile X, everything is moving, and moving in a positive trajectory. I wish that were true for all genetic and medical conditions, but it isn’t. Some non-Fragile X research studies have hit a dead-end. Others have had to stop while serious safety issues were resolved. Funding for some conditions has been reduced. Many families still labor in the dark with little or no parent or professional support.
In Fragile X, however, we’ve continued to push forward and the NFXF is committed to playing a key role – with the help of our friends and supporters – in ensuring that government funding increases, that no family is alone, that the latest and greatest knowledge is available to all families and professionals, that the best treatment is readily accessible to all who are impacted by a Fragile X-associated Disorder and that clinics are successful with their recruitment efforts.
Please phone or email me if you want to learn more and would like to join our effort to keep moving forward.