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The Blog of Our Fragile X World

News for the fragile X community. Research, what findings mean for families, event highlights, and study announcements.


In June, Our Fragile X World researchers Don Bailey, Melissa Raspa, and Anne Wheeler attended the International Society on Early Intervention conference in Sydney, Australia. Don presented about newborn screening for fragile X syndrome and other developmental disorders. Melissa and Anne presented about an early intervention program for infants with fragile X syndrome.

July is National Fragile X Awareness Month! July also marks the occurrence of the NFXF bi-annual international conference. Members of the Our Fragile X World team will be attending conference, which is being held July 11th through 15th at the Hyatt Regency in Cincinnati, Ohio. Come visit us at our booth and learn more about our work.

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.

In September, Our Fragile X World researchers Melissa Raspa and Anne Wheeler attended the 3rd International FMR1 Premutation Meeting in Jerusalem, Israel, where they presented results of recent studies and learned about the exciting work that is being done by other fragile X researchers.

Bringing researchers and healthcare professionals together to share knowledge is essential for improving the field of intellectual and developmental disabilities (IDD). In June, the American Association on Intellectual and Developmental Disabilities (AAIDD) held their annual meeting where professionals learned about "cutting edge research, effective practices, and valuable information on important policy initiatives." As part of our efforts to promote high-quality research on IDD, members of our team presented two posters at the meeting. We spoke with attendees about the unmet clinical needs of individuals with fragile X syndrome (FXS) and about how medical records are used for IDD research.

OFXW Research Recap for March 2017

This month, the OFXW team is busy sharing the results of recent research. We're excited to present posters on five of our latest studies at two conferences. From looking at new ways of measuring behavior and brain function, to seeing how we can help people learn more about taking part in studies, we're covering a lot of ground this month.