With Elizabeth Berry-Kravis, Randi Hagerman, Craig Erickson, Marcia Braden, and Jayne Dixon Weber
Moderated by Robert Miller
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.
RUNTIME 1:16:14
Panel
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
Marcia Braden, PhD, PC
Dr. Braden is a licensed psychologist with a clinical practice specializing in children and adolescents, and serves on the NFXF Scientific and Clinical Advisory Committee and the HillSprings Learning Center Advisory Committee. She is also a contributing author of Fragile X Syndrome; Diagnosis, Treatment, and Research, compiled and edited by Randi and Paul Hagerman, Children with Fragile X Syndrome: A Parent’s Guide, edited by Jayne Dixon Weber, and author of Fragile: Handle With Care: More About Fragile X Syndrome.
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.
about
Craig Erickson, MD
Dr. Erickson is a noted Fragile X expert and the medical director of the Fragile X Syndrome Research and Treatment Center in Cincinnati, Ohio. He is a friend of the NFXF and shares his knowledge on Fragile X and medical advice on a regular basis.
Dr. Erickson has worked to obtain continuous federal, foundation, internal, and industry funding to support his and his collaborators’ research over the last 10+ years of his career. He is the inventor or co-inventor of many patents focused on translational treatment development in neurodevelopment disorders held at Cincinnati Children’s Hospital Medical Center and previously at Indiana University School of Medicine. He is considered an international expert in the clinical treatment of Fragile X syndrome and has similar expertise in Fragile X-specific clinical trial development. Additionally, Dr. Erickson is an avid teacher of future generations of child psychiatrists and has received several teaching awards for his work.
about
Randi Hagerman, MD
Dr. Hagerman is a distinguished professor of developmental and behavioral pediatrician and the medical director of the UC Davis MIND Institute. She is internationally recognized as both a clinician and researcher in the Fragile X field. She is the director of the Fragile X Research and Treatment Center at the MIND Institute and holds an endowed chair in Fragile X research at UC Davis.
Moderator
about
Robby Miller
Robby has spent over 50 years helping children with special needs, their families, and the professionals who work with them. Robby is particularly interested in how families learn about, access, and receive meaningful services from competent professionals, organizations, and institutions. This interest led to his co-founding the Fragile X Clinical & Research Consortium, also known as FXCRC. In his spare time, you’ll find Robby singing and playing rhythm guitar in a rock band with his pals.