When scientists attend scientific symposiums, they don't typically present their "unfinished" work or interact with families directly impacted by the very diseases they are trying to cure. Yet that is exactly what happened at the 9th World Symposium on Vision Disorders hosted by The Vision of Children Foundation from Nov. 16-18 at The Grande Colonial in La Jolla.
Rancho Santa Fe residents Sam and Vivian Hardage established the Foundation in 1991 after their son was born with Ocular Albinism. At the time, there were no researchers studying this rare genetic vision disorder, for which there are no treatments and no cures. The Hardages were determined to encourage scientific research to find a cure for this congenital condition. Today, as it celebrates its 25th anniversary, Vision of Children is the foremost organization in the world supporting research for Ocular Albinism and related vision disorders.
The Foundation honored some Rancho Santa Fe residents who have donated over the years, including Linda and Marc Edwards for their support of the Foundation's Vision Hero Program, which features young visually-impaired people. Also recognized were Foundation board members Drs. Jacki and Ken Widder, Dr. Richard Schatz of Rancho Santa Fe, and Carmel Valley resident Dr. Greg Ostrow, director of pediatric ophthalmology at Scripps Health.
The symposium, called "When Vision Becomes Reality," was hailed as a "magnificent" experience of collaboration by scientists and family members. "The interaction among scientists made this conference extremely different from others," said Dr. Stephan Tsang, from Columbia University Medical Center in New York. "Talking with the families made it even more meaningful, giving us the inspiration to persevere."
The top vision researchers from around the world discussed published and unpublished work. "Our main goal is to move the needle so we can improve how people see," said Dr. Debora Farber, who is the Foundation's Scientific Advisor and leads a team of researchers conducting groundbreaking work at UCLA Stein Eye Institute. Farber's presentation on using byproducts of patients' own stem cells to replace defective DNA and ultimately treat Ocular Albinism was met with much excitement. Just last month, Farber's team announced the discovery of mutations in a second gene that can trigger this genetic vision disorder. The research, led by Dr. Alejandra Young, who also presented at the symposium, has major implications for better diagnosis and ultimately treatment for thousands of children.
Basic science research is a critical step on the path to clinical treatment trials, Dr. Brian Brooks, from the National Eye Institute, noted in his presentation. Scientists at the symposium experienced the marvel of seeing their work translate into actual human benefit when Dr. Arlene Drack, from the University of Iowa, showed videos of the dramatic improvements in the vision of children with Leber Congenital Amaurosis after gene therapy treatment.
"Findings like these give us hope for a day in the not-so-distant future when many other vision diseases will be curable," said Sam Hardage.
Families impacted by vision disorders attended the scientific sessions and a special session that featured presentations by Dr. Ostrow, Molly McGinniss, a genetic counselor who works for Illumina in San Diego, and Dr. Rebecca Kammer, a low vision optometric specialist from Anaheim, Calif.
"We are extremely thankful to all the symposium sponsors who enabled us to create a valuable experience for all the attendees," said Vivian Hardage. The sponsors included the following San Diego-based families and corporations: Allergan Foundation, Bell Charitable Foundation, Epstein Family Foundation, Farrell Family Foundation, Grande Colonial La Jolla, Hornblower Cruises & Events, Isakow Family Foundation, Tamara and Roger Joseph, The Marine Room and San Diego Private Bank.