Celebrating 40 Years Of Research Discovery

November 20th, 2014 by FFB Canada

Forty years ago, Jay and Malca Marin applied to become a registered charity to fight blindness. Today, the Foundation Fighting Blindness is Canada’s leading charity funding sight-saving research.

In 1974, there was no group in Canada giving information, or hope for a treatment or cure, to people living with retinal degenerative diseases. Jay and Malca Marin, whose son, Lorne, had been diagnosed with retinitis pigmentosa, decided to take action.

Inspired by the U.S. Foundation (then: National Retinitis Pigmentosa Foundation), the Marins decided to create a Canadian organization to bring families living with retinal diseases, and scientists, together.

Jay recruited Dr. Clem McCulloch, Chair of Ophthalmology at the University of Toronto to lead the Foundation’s first Scientific Advisory Board, and soon after, a registered charity was born. Their home became their workplace, as Jay describes, with papers and documents everywhere! Eventually, Dr. McCulloch found them a modest office.

They started making phone calls about their mission, but some people living with retinal degenerative diseases were afraid to give their support publicly, for fear of losing their job or being shunned.

The Marins persevered and held a public meeting, hoping to attract 10-15 supporters. Malca called radio stations and got the word out about the Foundation. Dr. McCulloch cautioned them not to get their hopes up, but amazingly, more than 150 people showed up! Jay recalls a proud moment when Dr. McCulloch said to him, “Jay, you have a Foundation!”

Since then, support for the Foundation Fighting Blindness has grown steadily, along with scientists’ knowledge about retinal diseases. When the Foundation was created, Jay recalls that no genes for retinitis pigmentosa had been discovered. Since then, scientists have identified dozens of genes that cause vision loss, and are working on therapies to protect and restore sight for many types of retinal degenerative diseases.

Forty years later, Jay and Malca, now married 67 years, continue to support the Foundation Fighting Blindness as monthly donors. Their son, Lorne, stays connected to the Foundation and vision research through Vision Quest.

The Foundation thanks the Marins, and each and every person who has since supported the Foundation Fighting Blindness, for making the journey of discovery possible.