Tyler G. James, Ph.D., MCHES®, assistant professor in the Department of Family Medicine at the University of Michigan, has been selected as one of 13 awardees of the 2023 CHARGE Syndrome Foundation Davenport Fellowship. The competitive fellowships are awarded to early-career professionals who have shown a commitment to the CHARGE syndrome community and are interested in becoming more involved professionally within the community.
The Davenport Fellowship program unites clinical, research, therapeutic and educational professionals at international CHARGE Syndrome conferences, where they can learn more about CHARGE, interact with one another and get to know individuals with CHARGE, along with their families.
CHARGE is an abbreviation for several of the features common in the disorder: coloboma, heart defects, atresia choanae (also known as choanal atresia), developmental delay (“growth retardation”), genital abnormalities, and ear abnormalities. One in 10,000 infants are affected by CHARGE each year, according to National Institutes of Health research. Babies with CHARGE syndrome may need to spend prolonged periods of time in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems often accompany the syndrome and many children with CHARGE have hearing loss, vision loss, and balance problems, which can delay development and communication skills.
As a Davenport Fellow, James will participate in activities including attending the foundation’s Professional Day Conference on July 20 and the International CHARGE Syndrome Conference, which runs until July 23 in Orlando, Fla. The conference will provide updated information on genetic studies of CD7 disorder (the genetic mutation related to CHARGE syndrome); inclusive education in K-12 settings; and addressing psychological and behavioral concerns with CHARGE.
James will also be matched with a family with a child with CHARGE to learn about the experiences of families raising a child with CHARGE syndrome. Other activities include volunteering for a half-day of interaction in a child day camp setting and attending daily sessions to interact with advisors and other Davenport Fellows, as well as seasoned professionals who work with individuals with CHARGE. Additional activities include DeafBlind simulations and meetings with adults with CHARGE syndrome
“I was introduced to the CHARGE syndrome community in 2017 when I worked as an interpreter at the conference,” James said. “CHARGE syndrome is the leading genetic etiology of DeafBlindness. Having the opportunity to receive scientific training in CHARGE syndrome through the Davenport Fellowship will provide a unique insight into this rare disease and will serve as an accelerant for my career in sensory disability health research.”
The Davenport fellowship is named in honor of Sandra Davenport, MD, a medical geneticist with expertise in sensory conditions who was a founding member of the CHARGE Syndrome Foundation.