Kellogg Hosts Conference for Retinal Dystrophy Patients, Caregivers

On Oct. 19, 2019, Kellogg, with partial support from the Foundation Fighting Blindness and the Milton M. Ratner Foundation, hosted a one-day informational and inspirational forum for patients living with inherited retinal diseases.

The event, Living with a Retinal Dystrophy— Tools to Help You Thrive, drew more than 100 people—about 70 patients and 30 family members or caregivers—from Michigan, Ohio, Indiana and Illinois.

One session focused on clinical issues. “We provided education on the various inherited retinal syndromes and their genetic origins,” says Kari Branham, M.S., C.G.C., a Kellogg genetic counselor and director of the event. “We also reviewed current treatment options, including clinical trials of experimental gene and stem cell therapies.”

A second session covered living with a retinal dystrophy. Specialists in clinical psychology, occupational therapy and low vision, as well as representatives from the local school district and Leader Dogs for the Blind chapter shared ideas and resources.

“We can’t change the diagnosis,” says Branham. “But events like this help patients and caregivers cope with these challenging diseases by learning from experts and from each other.”