Research Updates and a Chicago Chapter

On May 5, the Greater Chicago Fragile X Group held a Research Update featuring Dr. Elizabeth Berry-Kravis. Participants in the meeting heard from Dr. Elizabeth Berry-Kravis as she shared information about current areas of research into Fragile X and on-going clinical trials.

Missy Zolecki, who helped found the Greater Chicago Fragile X Group eight years ago, attended and observed, “Liz shared with everyone the lessons learned from previous medication trials.  Although they may not have ended with the desired outcomes, many lessons were learned. Subsequently, she proposed a new study model, and after many conversations, the new model was accepted!!  There are many non-pharmacologic and medication opportunities that are currently open for enrollment, with even more exciting opportunities opening in the near future.  The Fragile X community is so very fortunate to have such a committed, brilliant and persuasive professional fighting to improve our quality of life!!”

Indeed, Missy, we are fortunate that Dr. Elizabeth Berry-Kravis is standing up to Fragile X alongside us.

Missy continues to serve the the NFXF families by sharing her expertise and guidance with chapters as the Central Regional Leader and serving on the Executive Council of the Fragile X Clinical Research Consortium. Dr. Berry-Kravis is a member of the NFXF’s Scientific and Clinical Advisory Committee.

Participants also heard from Paula Lipford, NFXF Director, Volunteer Programs, and shared their interest in establishing the NFXF Greater Chicago Chapter to offer support in delivering the mission to families in the area.

If you are interested in helping families in the Chicago area, please visit our Volunteer Page to sign up. If you are interested in participating in clinical trials, check out ones currently recruiting.