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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 hybrid event scheduled on March 21 from noon until 1:30 pm at Graham Memorial Hall, Room 039; reception to follow. 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.

Mar 21, 2023 12:00 PM in Eastern Time (US and Canada)

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Anne Wheeler, PhD
Neurodevelopmental psychologist and senior research analyst @RTI International
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