Conference Panel

Caring for Adults with Fragile X Syndrome

01 h 16 m

Parents and other caregivers must consider many factors when caring for adults with Fragile X syndrome, and the process of planning and obtaining adequate care can be quite complicated. If you’re currently caring for an adult with FXS, the expertise behind this panel is second to none.

With Elizabeth Berry-Kravis, Randi Hagerman, Craig Erickson, Marcia Braden, and Jayne Dixon Weber. Moderated by Robert Miller.
Learn more about the presenters

About the Panelists

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.

Marcia Braden

Marcia Braden, PhD, PC, is a licensed psychologist with a clinical practice in Colorado Springs, Colorado, specializing in children and adolescents. She is a former teacher with experience teaching general and special education. She has written and published numerous articles related to education and behavior management strategies, techniques, and interventions. Dr. Braden is a member of the Scientific and Clinical Advisory Committee.

Dr. Braden is the author of Fragile – Handle With Care: More About Fragile X Syndrome. She is a contributing author to Fragile X Syndrome: Diagnosis, Treatment, and Research, compiled and edited by Randi and Paul Hagerman; and Children with Fragile X Syndrome: A Parents’ Guide, edited by Jayne Dixon Weber.

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.

Craig A. Erickson

Craig A. Erickson, MD, is a professor of Psychiatry at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati College of Medicine-Affiliated. Dr. Erickson leads a neurodevelopmental clinical and research group focused on improving clinical care through research discovery. He is the director of the Cincinnati Fragile X Research and Treatment Center, one of the largest such programs in the world. He serves as the chair of the Clinical Trials Committee organized by the National Fragile X Foundation and is a leader in translational medicine efforts in Fragile X syndrome, autism, and related disorders. Additionally, he is the director of research in the Division of Psychiatry at Cincinnati Children’s Hospital. 

Randi J. Hagerman

Developmental pediatrician Randi J. Hagerman, MD, FAAP, is a highly regarded professional within the Fragile X community. She co-founded the National Fragile X Foundation in 1984 and served on the board for 25 years. In 2009, she decided it was time to step aside and let others bring their expertise to the board, though she continues to help guide the foundation to this day.

There is no aspect of the NFXF that Randi has not helped shape. Her strength as both a clinician and researcher has informed the NFXF mission and strategic plan. She and her husband, Dr. Paul Hagerman, generously support the NFXF mission. While Randi is no longer a board member, she is active on the NFXF Scientific & Clinical Advisory Committee and the Fragile X Clinical & Research Consortium where she represents the UC Davis Medical Center’s MIND Institute as medical director of the Fragile X Clinic.

Randi continues to be a sought-after speaker and her work has expanded from Fragile X syndrome to all Fragile X-associated disorders. Randi is continually on the go as an international spokesperson for Fragile X. Fortunately, she’s only seconds away by phone when we need to call upon her for her guidance, advice, and wisdom.

Moderated By

Robby Miller

Robby has been affiliated with the NFXF since 1999 and has spent over 50 years helping children with special needs, their families and the professionals who work with them. He first became a part of the Fragile X community when close friends had two children with Fragile X syndrome. Robby is particularly interested in how families learn about, access, and receive meaningful care and services. This interest led to his co-founding the Fragile X Clinical & Research Consortium. In his spare time, you’ll find Robby singing and playing rhythm guitar in a band with his long-time musical partners.