With Our Panel of Experts Rebecca Shaffer, Lauren Schmitt, Tracy Murnan Stackhouse, Elizabeth M. Berry-Kravis, and Randi J. Hagerman

Moderator:  Linda Sorensen
Runtime: 1:16:46

About the Panelists

Rebecca Shaffer

Director of Psychological Services at Cincinnati Fragile X Treatment and Research Center, Cincinnati Children’s Hospital Medical Center

Dr. Shaffer is the director of psychological services at the Cincinnati Fragile X Treatment and Research Center. She provides psychological assessment and behavioral treatment to a wide range of individuals with Fragile X and carriers. She also conducts research and provides assessments for research studies.

Lauren Schmitt

Assistant Professor, Cincinnati Children’s Hospital Medical Center

Dr. Lauren Schmitt is a licensed clinical psychologist with extensive training in cognitive functioning in individuals with neurodevelopmental disorders. Since joining the Fragile X Research and Treatment Center at Cincinnati Children’s Hospital Medical Center over four years ago, she has had critical involvement in the current and past federally-funded U54 FXS Center, focused on identifying clinical correlates of neurophysiological biomarkers and characterizing potential subgroups of drug responders. In addition, her K23 Patient-Oriented Mentored Career Development Award focuses on identifying translational biomarkers of higher-level functioning, including speech production and cognitive flexibility, that can be used across mouse and man.

Tracy Murnan Stackhouse

Executive Director, Co-Founder and Occupational Therapist, Developmental FX

Tracy Murnan Stackhouse, MA, OTR is co-founder of the Developmental FX in Denver. She is a leading pediatric occupational therapist (OT) involved in clinical treatment, research, mentoring, and training regarding OT intervention for persons with neurodevelopmental disorders, especially Fragile X Syndrome and autism. Tracy has a master’s degree in developmental psychology/neuroscience. She received her NDT training with Lois Bly. She is SIPT Certified and was the clinical specialist in sensory integration at The Children’s Hospital in Denver as well as the OT for the Fragile X Research and Treatment Center.

Tracy continued her clinical and research work with Dr. Randi Hagerman at the UC Davis MIND Institute during its start-up year. Tracy has written several book chapters on sensory integration and neurodevelopmental disorders, and teaches nationally and internationally on sensory integration, autism, Fragile X, and related topics. She is the lead author for the SpIRiT  & S.T.E.P.S.I. Clinical Reasoning Tools which are leading-edge evidence-based models in pediatric OT. Tracy is a member of the National Fragile X Foundation Clinical Research Consortium, the Scientific And Clinical Advisory Committee, and the NFXF Advisory Council.

Elizabeth Berry-Kravis, MD, PhD

Professor, Rush University Medical Center

Dr. Elizabeth Berry-Kravis is a professor of pediatrics, neurological sciences, and biochemistry at Rush University Medical Center in Chicago. She attended the University of Notre Dame for her undergraduate studies and the University of Chicago for her medical degree, PhD, and training in pediatric neurology.

She moved to Rush in 1992 and established the Fragile X Clinic and Research Program, through which she provides care to over 700 patients with Fragile X syndrome.

She has studied Fragile X syndrome medical issues, epilepsy, and psychopharmacology, and 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.

Her laboratory studies the cellular roles of the protein FMRP, its relationship to phenotypes, and optimization of genetic testing methods.

In the past decade, she has expanded clinical translational work to other neurodevelopmental disorders and genetic neurodegenerative diseases including autism spectrum disorder, Phelan-McDermid syndrome, Rett syndrome, Angelman syndrome, Smith-Magenis syndrome, DDX3X syndrome, Niemann-Pick type C, Batten disease, pantothenate kinase-associated neurodegeneration, and creatine transporter deficiency. She has over 250 publications on genetic neurological diseases and is on advisory and review boards for the FRAXA Research Foundation, National Fragile X Foundation, Phelan-McDermid Syndrome Foundation, International Rett Syndrome Foundation, Angelman Syndrome Foundation, Foundation for Angelman Syndrome Therapeutics, and the GATHER Foundation.

She has received the NFXF Jarrett Cole Clinical Award, FRAXA Champion Award, NFXF William and Enid Rosen Research Award, March of Dimes Jonas Salk Research Award, American Academy of Neurology Sidney Carter Award in Child Neurology, John Merck Fund Sparkplug Award, FRAXA Ingenuity Award, and Child Neurology Society Denckla Award for her work in treatment translation for fragile x syndrome and genetic cognitive disorders.

Randi J. Hagerman, MD

Medical Director Fragile X Research and Treatment Center, UC Davis MIND Institute

Dr. Hagerman is a developmental and behavioral pediatrician who has worked in the Fragile X field for over 30 years on both FXS and premutation disorders. She is at the MIND Institute at UC Davis where she holds an Endowed Chair in Fragile X Research and she runs the Clinical Trials Program and is the medical director of the MIND Institute. She has published over 400 articles related to Fragile X and related disorders. In the spirit of mentorship and collaboration, the Randi J. Hagerman Summer Scholar Research Awards proudly bears her name.

Additional Resources

Behavior & Fragile X Syndrome
When discussing Fragile X syndrome and behavior, it is important to note that — like every person — the focus should be on the individual. Many behaviors are positive, and it is those behaviors you will see most often in addition to challenging behaviors. Behavior problems serve a purpose (or a function) and are often a form of communication. Addressing behavioral challenges in an individual with FXS should start with a comprehensive evaluation. A proactive approach with appropriate support and accommodations will likely foster positive outcomes and set up the individual with FXS to succeed in their home, school, or community.