Lessons from the CHARGE Conference
NRTC research team members, Karla Antonelli and Anne Steverson, attended the 14th Annual CHARGE Syndrome Conference on August 2-5 in Dallas, Texas. This conference attracted professionals and families who want to know how to manage the symptoms of CHARGE, a genetic syndrome that includes hearing and vision loss.
Antonelli, the principal investigator, felt it was important that the NRTC have a presence at this conference because it provided “the opportunity to hear the concerns of individuals with CHARGE syndrome, their family members, and professionals in this community as well as learn about the strides made in research and rehabilitation.” She was “so happy we got the chance to be there to talk about the services and resources we provide.”
Conference presentation topics included education; behavior and communication; medical research; family support; and adolescence & adulthood. Along with attending the conference, our researchers presented their poster 4to24: Development of a Transition Resource App for Parents. This app, which will be field-tested soon, provides a checklist of age-appropriate activities for youth with blindness or visual impairment (B/VI) or deaf-blindness (DB) to help them obtain employment upon completion of their education. More information about the app is available on our research page here
Steverson, research associate II, said that the CHARGE community is “very strong and supportive of continued research and its application to promote opportunities for people with CHARGE.” She hopes that “our products and research prove to be just as beneficial and valuable in promoting opportunities for the CHARGE community.”