NFXF Webinar Series

Aging in Fragile X Syndrome

01 h 04 m

From our NFXF Webinar Series, Dr. Berry-Kravis joined us and shared a brief presentation about what we’ve learned about the problems that face adults living with Fragile X syndrome from the FORWARD data — the largest database of information on Fragile X syndrome in the United States — including what adults are doing in their community and their living situation.

About the Webinar

Presented by Dr. Elizabeth Berry-Kravis
Learn more about the presenters

Topics covered include long-term medication management, health concerns, as well as the importance of continuing to utilize previously learned skills, such as reading.

Related Materials: Presentation Slides

Additional Resources

Dr. Berry-Kravis ended the webinar with her top three recommendations she makes to patients and their families who visit the Fragile X Clinic and Research Program at Rush University Medical Center.

  1. Engage in consistent and regular physical activity following the American Heart Association recommendations to support health and wellness.
  2. Prevent reclusiveness or social isolation by creating a plan of activities and having a consistent schedule that provides predictability.
  3. Ensure that there is a support person (staff, family, medical or therapy provider) who can identify antecedents or other possible causes of behavioral changes, including medical problems. Some individuals with Fragile X syndrome may not be able to describe or communicate what may be causing certain behaviors.

Related Resources

Below are links to a collection of information and resources focused on adulthood and publications resulting from FORWARD data:

About the Author

Elizabeth Berry-Kravis

Elizabeth Berry-Kravis, MD, PhD, established the Fragile X Clinic and Research Program at Rush University Medical Center in 1992. She studies Fragile X syndrome medical issues, epilepsy, and psychopharmacology and provides care to over 700 patients with FXS. She has been a leader in translational research, including the development of outcome measures and biomarkers, natural history studies, newborn screening, and particularly clinical trials of new targeted treatments.

Dr. Berry-Kravis’s laboratory studies the cellular roles of the Fragile X protein (FMRP), its relationship to phenotypes, and the optimization of genetic testing methods. She is a longstanding member of the NFXF Scientific and Clinical Advisory Committee, and Clinical Trials Committee, and is the principal investigator of the CDC-funded FORWARD-MARCH natural history project for Fragile X.

Dr. Berry-Kravis attended the University of Notre Dame for her undergraduate studies and the University of Chicago for her doctoral degrees (MD and PhD) and training in pediatric neurology.