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Innovations and interventions for children with rare neurogenetic conditions and their families

The UNC Frank Porter Graham Child Development Institute is pleased to welcome Anne Wheeler, PhD, as the presenter of its 2023 Barbara Hanna Wasik Distinguished Lecture. This is a virtual event scheduled on March 21 from noon until 1:30 pm.

Innovations and interventions for children with rare neurogenetic conditions and their families 

This lecture will delve into the unique needs of children and families affected by a diagnosis of a rare neurogenetic condition (e.g. fragile X syndrome, Angelman syndrome). As advances in genomic technologies and therapeutic options are made, more children with neurodevelopmental differences will receive a diagnosis of a rare neurogenetic condition. These diagnoses can provide answers regarding prognosis, connect families to advocacy organizations and tailored support, and in some cases, open doors to genetic therapies that may alter the trajectory of the condition. Understanding the phenotypes of these conditions and how they may impact the larger family unit is an important component to providing adequate support. This lecture will present several innovations and interventions that are focused on improving the lives of children with neurogenetic conditions and their families, including newborn screening efforts, the implications of genetic therapies, targeted early intervention programs, and challenges and solutions for assessment for diagnostic and evaluation purposes.   

Anne Wheeler, PhD, is a neurodevelopmental psychologist and senior research analyst at RTI International, where she conducts multiple research projects focused on the development of tools and strategies to improve outcomes for individuals with intellectual/developmental disabilities, especially those with rare monogenetic/neurogenetic conditions. She is the director of the LADDER database, an effort to curate and harmonize data collected on individuals with Angelman or Dup15q syndromes around the world; is working on efforts to identify and improve outcome measures used to determine change in clinical trials for rare conditions; and leads activities to reduce the age of diagnosis and provide targeted early intervention and support services for children diagnosed in infancy.  

Wheeler is also an adjunct associate professor of Psychiatry and School Psychology at the University of North Carolina at Chapel Hill and a practicing licensed psychologist at the Carolina Institute for Developmental Disabilities where she provides developmental and behavioral consultation for individuals with Angelman and Dup15q syndromes. She has been involved in clinical service provision and research focused on developmental and familial outcomes for children with genetic diagnoses for more than 20 years.  

Register for this virtual event by Monday, March 20 at:go.unc.edu/bhwasik

Contact Erica Nouri (erica.nouri@unc.edu) with questions regarding this event.  

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