The Vision of Children 10th World Symposium

Sam and Vivian Hardage with the researchers from this year’s Symposium

Rancho Santa Fe residents, Sam and Vivian Hardage, established The Vision of Children 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 were no treatments or cures. The Hardages wanted to advance scientific research and find a cure for this congenital condition. Today, as it celebrates its 28th anniversary, The Vision of Children Foundation is the foremost organization in the world supporting research for Ocular Albinism and related vision disorders.

 The Vision of Children Foundation recently hosted its 10th World Symposium for genetic vision disorders at the Grande Colonial in La Jolla.  This meeting of researchers from around the world was a collaboration of some of the brightest minds in the vision research industry. Researchers and families made the trip from places like New York, England, Germany and Spain, to be present during the discussions of unpublished research in the hopes of accelerating the finding of a cure.

Scientists taking notes and listening to a presentation

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 what took place at the 10th World Symposium hosted by The Vision of Children Foundation.

 Detailed research presentations were given to scientists, doctors, and families waiting to absorb as much information as possible. The researchers come from many different institutions to share sensitive information. The Vision of Children Foundation has cultivated a reliable network of researchers to invite to the Symposium and has established a unique amount of trust between the researchers when they share their work. There is a spirit of problem solving facilitated between researchers of varying affiliations, which is unique to The Vision of Children’s Symposia.

 Scientists and families alike marveled at the presentation given by Dr. Arlene Drack, from the University of Iowa, in which she showed videos of the dramatic vision improvements in children with Lebers Congenital Amaurosis after undergoing gene therapy treatment.

 Perhaps one of the most unique aspects of The Vision of Children Symposia is the invitation of families directly impacted by the diseases the researchers are striving to cure. The opportunity for families to listen and learn from some of the most advanced minds in vision research provides the hope, comfort, and answers they have searched for. For three days, parents and their children are able to listen in as researchers discuss their research findings and new ways to combat setbacks they might be facing in their labs.

Sam and Vivian Hardage with the Families that attended this year’s Symposium.

Included in the program for this year’s 10th World Symposium was an opportunity to participate in family sessions. Greg Ostrow, a Vision of Children board member and Director of Pediatric Ophthalmology for Scripps, led the discussion on the various types of gene therapies available and the research VOC is doing to accelerate treatments. Also present at the family session, were a genetic counselor from Illumina and a representative from NorthState who shared low vision device technology.

Phil and Barbara Huffman receiving the Vision of Children Leadership Award

The final dinner was held at a new venue, called Covo, in La Jolla. During the dinner, the Vision of Children Foundation honored Rancho Santa Fe residents who have supported the foundation over the years; Tamara Lafarga-Joseph and Roger Joseph, Jan and George DeVries, and Stephanie Hanson.  Also attending the dinner were Vision of Children Board Members Debora Farber, Greg Ostrow, Dan Gil, Jacki Johnson and Ken Widder. In 2017, Jan and George DeVries were recipients of the Vision of Children Leadership award. That baton was passed onto Phil and Barbara Huffman this year for all of their help in making the 10th World Symposium happen.

The entertainment for the night was Vision of Children’s own Vision Hero, Joel Gomez. Joel has Blue Cone Monochromacy and is legally blind.  In addition to singing and playing multiple instruments, Joel recently participated in two qualifying Paralympic races where in the 800 meter he ranked #1 in the U.S. and 4th in the world and in the 1500 meter he ranked #2 in the U.S. and #12 in the world.  Joel sang two songs for the guests, including one of his own songs titled “Running Blind”, bringing the room to tears.

Joel Gomez performing his single “Running Blind” for the guests at Covo

This year, the Symposium’s message was "Our Focus is Clear". The event was hailed as a "fabulous" experience of collaboration by scientists and family members; "I truly enjoyed participating in the 10th World Symposium of the Vision of Children Foundation, learned a lot, made new contacts, and consolidated other ones," said Dr. Lluis Montoliu, a CSIC Research Scientist at the Spanish National Centre for Biotechnology (CNB) in Madrid, Spain, “…I returned home with lots of notes and ideas to explore and further discuss. This is the way to advance our understanding of albinism in order to be able to devise innovative therapies to alleviate or fix the associated visual impairment.”