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 November 16-18, 2016 at The Grande Colonial in La Jolla, CA.
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The top vision researchers from around the world discussed published and unpublished work.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. Dr. 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, Dr. 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, who co-founded Vision of Children with his wife, Vivian, 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.
Families impacted by vision disorders attended the scientific sessions and a special session that featured presentations by Dr. Greg Ostrow, Director of Pediatric Ophthalmology at Scripps Health San Diego, Dr. Rebecca Kammer, a low vision optometric specialist from Anaheim, CA, and Molly McGinniss, a genetic counselor who works for Illumina in San Diego. “Current genetic research holds terrific promise for treating vision disorders because the eye is so much more accessible, compared with other genetically caused diseases that are more systemic and impact the whole body,” McGinnis said. (Click here for more information about genetic testing.)
For a young couple from Chicago whose two-year-old daughter has Oculocutaneous Albinism, the Symposium provided an opportunity to learn from other parents’ experiences, as well as gain a better understanding of what the future holds. Another mother, who has an 18-year-old with the same condition, was surprised to learn that her daughter might be able to obtain a driver’s license. “I might not have known this had it not been for attending this Symposium,” she said.
Thank you to all the Symposium sponsors, including the Allergan Foundation, Bell Charitable Foundation, Epstein Family Foundation, Farber Family Foundation, Farrell Family Foundation, Grande Colonial La Jolla, Hornblower Cruises & Events, Isakow Family Foundation, Tamara and Roger Joseph, Marmontor Foundation, The Marine Room and San Diego Private Bank.