Last week, Our Fragile X World researcher Don Bailey traveled to Washington D.C. to participate in National Fragile X Advocacy Day. In addition to spending time with families affected by fragile X on Capitol Hill, Don participated in a meeting to update the NIH Research Plan on Fragile X Syndrome and Associated Disorders.
National Fragile X Advocacy Day
Every year, the National Fragile X Foundation holds National Fragile X Advocacy Day in Washington, D.C. On advocacy day, families affected by fragile X meet with their congressmen and talk to them about how fragile X affects their lives. Families encourage their congressmen to support policies that benefit the fragile X community, such as those that affect health insurance coverage or promote fragile X research. Advocacy day is important because lawmakers may not know much about fragile X, and they are more likely to support policies and practices that serve the fragile X community when they can "put a face" on the disorder.
Our Fragile X World researcher Don Bailey participates in advocacy day whenever he can. On Monday March 5, he helped train families on how to talk to their congressmen. Then on Tuesday, March 6, he accompanied parents of children with fragile X and self-advocates as they met with congressmen such as David Price (D-NC) on Capitol Hill. Don reported that the day was a success and a great experience. He said, "Getting to interact with families and self-advocates in the fragile X community is one of the most rewarding parts of my professional life. I was happy to help get the word out in Washington about why it's important to continue to fund fragile X research."
Updating the NIH's Research Plan on Fragile X
While he was in Washington, D.C., Don also participated in a meeting at NIH to help update the NIH Research Plan on Fragile X Syndrome and Associated Disorders (PDF). This plan outlines research goals for all NIH institutes which conduct research on fragile X syndrome. The plan was originally published in 2008 and is updated every 5 years. It was developed by the NIH Fragile X Research Coordinating Group, which includes representatives from the scientific community, families affected by fragile X, and advocacy groups. The plan helps determine what topics are the highest priority for fragile X research
Impact on Families Affected by Fragile X
It is encouraging that lawmakers are hearing the stories of families affected by fragile X, and that government research agencies like NIH have a plan for continuing research on fragile X. At Our Fragile X World, we are excited to be part of research that could improve the lives of families affected by fragile X!
Share Your StoryDid you participate in this year's NFXF advocacy day? What did you learn and experience? Please consider sharing your story with us.
About the Author
Sara Andrews is a research analyst at RTI International in the Center for Newborn Screening, Ethics, and Disability Studies. Her research focuses on the perspectives of individuals with disabilities and their families.