Presented by Dr. Elizabeth Berry-Kravis
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.
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
Presenter: Dr. Elizabeth Berry-Kravis
Moderator: Jayne Dixon-Weber
Runtime: 1:04:20
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.
- Engage in consistent and regular physical activity following the American Heart Association recommendations to support health and wellness.
- Prevent reclusiveness or social isolation by creating a plan of activities and having a consistent schedule that provides predictability.
- 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:
- Adulthood and Fragile X Syndrome: Our collection of adulthood resources.
- Height and BMI – A Longitudinal Assessment
- Psychotropic Drug Treatment Patterns in Persons with FXS
- FXS and Language Across the Lifespan
- Health Related Quality of Life
- NIH Toolbox
- MyFXResearch Portal: Search for trials and studies to participate in.
about
Elizabeth Berry-Kravis, MD, PhD
Dr. Berry-Kravis is a professor of pediatrics, neurological sciences, and biochemistry at Rush University Medical Center in Chicago. She established the Fragile X Clinic and Research Program in 1991, providing care to over 700 patients with Fragile X syndrome since that time. Her research has included studies of medical issues, epilepsy and psychopharmacology in FXS, neurological problems in FXTAS, and in particular, translational work in FXS including outcome measures and biomarkers, natural history, newborn screening, and clinical trials of new targeted treatments in FXS.
Dr. Berry-Kravis’s laboratory studies the relationship between FMRP and clinical function and methods for optimizing genetic testing in Fragile X-related disorders (FXD). In the past 18 years, she’s been the site or national principal investigator on 24 clinical trials in FXS and numerous NIH- and CDC-funded projects on FXS. She is on the NFXF Scientific and Clinical Advisory Committee and is chair of the Clinical Committee of the FXCRC. She received the Jarrett Cole Award for clinical work in FXS in 2002, the Hagerman Award for excellence in FXTAS research in 2004, the FRAXA Champion Award in 2011, the NFXF William and Enid Rosen Research Award in 2014, the March of Dimes Jonas Salk Research Award in 2015, the American Academy of Neurology Sidney Carter Award in Child Neurology in 2016, and the John Merck Fund Sparkplug Award in 2016, all for work in FXS.
about
Jayne Dixon Weber
Jayne served as the NFXF director of community education (and other positions over the years) from 2007 to 2023. She has two adult children, a son with Fragile X syndrome and a daughter. Jayne is the author of Transitioning ‘Special’ Children into Elementary School, co-author of Fragile X Fred, and editor of Children with Fragile X Syndrome: A Parents’ Guide. Jayne likes to read, enjoys photography, and goes for a walk every day.