For graduate students in Mississippi State’s College of Education, that phrase rings true this month through participation in the 13th Biennial CHARGE Syndrome Conference in Melbourne, Australia.
During a two-week trip “down under,” school psychology doctoral students Megan N. Anderson of Madison; Matthew A. Ferrigno of Babylon, New York; Keely M. McCulla of Nashville, Tennessee; and Hailey E. Ripple of Jacksonville, Illinois, are presenting research and networking with individuals, families, professionals and educators who also are working to advance awareness and improve quality of life for individuals with CHARGE Syndrome.
Accompanying the students is Assistant Professor of School Psychology Kasee Stratton-Gadke, a leading researcher of CHARGE Syndrome and founder and director of the university’s Bulldog CHARGE Syndrome Research Lab. The lab is one of only two in the world where researchers are uncovering breakthroughs in treatment and prevention and providing crucial support to parents, families and physicians caring for individuals with the rare genetic condition.
Occurring in approximately one of every 10,000 live births, CHARGE Syndrome is considered the leading cause of congenital blindness and deafness in children. The majority of individuals with CHARGE have limited to no formal communication system, which can present challenges relating to education, feeding, puberty, sexuality and family dynamics.
“Because all of their sensory systems are impacted, individuals with CHARGE may not have exposure to social cues, which can lead to behavioral concerns. However, we typically can resolve these concerns with simple interventions,” Stratton-Gadke said. “We have been studying individual education plans to see how they can be modified to help children with CHARGE as they participate in classroom, physical education and social settings.”
Recently accepted into a pre-doctoral internship at Johns Hopkins University School of Medicine, Ripple is confident her attendance at the Australia conference will yield helpful data for her MSU doctoral dissertation. She is especially interested in identifying interventions that can help address behavioral challenges of children with CHARGE.
“Word of mouth is the best way to raise awareness of CHARGE, so I’m really excited about the opportunity to learn from other professionals and see how the families of children with CHARGE interact in a close-knit setting,” Ripple said. “It’s a privilege to do research and work with these amazing children who have overcome and accomplished so many things. The CHARGE community is so neat in that aspect.”
Stratton-Gadke said students also will gain insight on CHARGE-related language development and communication complexities while visiting the Royal Institute for Deaf and Blind Children in Sydney and the MARCS BabyLab at Western Sydney University.
“By touring these facilities, our students can see differences in the U.S. and Australian pediatric settings, and that knowledge could help us in framing possible research collaborations for teaching language,” Stratton-Gadke said. “We have a stable lab doing some amazing research, so we are looking forward to putting Mississippi State on the map in a different continent by sharing how our research is supporting children with CHARGE and their families.”