Fighting Blindness Canada Milestones
Fighting Blindness Canada (FBC) is celebrating 50 years of funding vision loss research that is taking place in hospitals and universities across Canada, and around the world. FBC is funding studies to understand the causes and effects of eye diseases, to retain, protect and restore vision for people living with vision loss. This timeline marks just a few of our milestones.
We also invite you to explore inspirational stories of our community members, volunteers, researchers and others who all contributed to our mutual success over the past five decades.
Fighting Blindness Canada (FBC) is founded in 1974 as the Retinitis Pigmentosa Foundation of Canada by a passionate group of families led by the late Jay and Malca Marin who were driven to find treatments for inherited retinal diseases (IRDs).
Dr. J.C (Clem) McCulloch, ophthalmologist, Chair of Ophthalmology at University of Toronto and first chair of FBC’s Scientific Advisory Board becomes the first recipient of research funds from FBC in 1974.
In 1979, Jim Bentley and the York Wing Motorcycle Club start a charity motorcycle ride called “Ride for Sight,” raising more than $26 million over the years.
In 1984, Dr. Ian MacDonald receives funding for the first molecular genetics project researching choroideremia, a rare X-linked recessive form of hereditary retinal degeneration. In 2015, Dr. MacDonald launches the first Canadian gene therapy trial for choroideremia.
Dr. Jane Green receives funding to enhance understanding of hereditary vision loss in Newfoundland, with a focus on Bardet Biedl syndrome (BBS). In 2018, she is honored with the Order of Canada for her groundbreaking discoveries of the genetic basis of inherited eye diseases.
The first genes associated with an inherited retinal disease (IRD), RHO and CHM, are discovered in 1990.
FBC-funded researchers are at the vanguard of inherited retinal disease (IRD) research, discovering the identity and function of genes that cause IRDs, including ROM1 and PRPH2. Today, more than 300 genes have been identified that cause an IRD, including many discovered by Canadian researchers.
Fighting Blindness Canada’s first Vision Quest conference, now called View Point, is held in 1994. More than 20,000 people have participated in Fighting Blindness Canada’s View Point.
Comic Vision, the signature comedy show in support of vision research, launches in 1999, raising $10 million towards sight-saving vision research since inception.
The Fighting Blindness Canada Inherited Retinal Disease Patient Registry launches — one of the first registries of its kind in the world. Created by Dr. Elise Heon, it has helped more than 50 patients participate in clinical trials or receive treatment.
Multiple international groups launch clinical trials to test a gene therapy for retinitis pigmentosa and Leber congenital amaurosis caused by mutations in RPE65.
FBC expands its mission beyond IRDs to include age-related macular degeneration (AMD).
New drugs called anti-vascular endothelial growth factor (anti-VEGFs) approved to treat wet age-related macular degeneration (AMD). Improvements in treatments have led to a reduction in vision loss and blindness caused by AMD.
Cycle for Sight launches in 2009 with more than 4,000 participants raising more than $6 million in its 15 years.
First Canadian gene therapy clinical trial launches for choroideremia, with funding from FBC.
FBC launches first Clinician Scientist Emerging Leader award, which goes to Dr. Brian Ballios. In the 2021, Dr. Ballios launches an independent career with a research focus on stem cell therapy and starts the first adult IRD clinic in Canada.
FBC supports Dr. Robert Devenyi’s observational study on the first approved retinal prosthesis, Argus II, which aims to restore vision for advanced retinitis pigmentosa. Researchers are continuing to develop, test and improve visual prostheses.
Restore Vision 20/20 invests $2.5m to develop new therapies, such as stem cell therapy, for advanced retinitis pigmentosa, which are now advancing to clinical trials.
FBC further expands its mission to include all blinding eye diseases.
Luxturna becomes the first gene therapy treatment approved for an IRD treatment in Canada.
Jack McCormick, a dedicated Fighting Blindness Canada community member who was born with mutations in the RPE65 gene, is one of the first Canadians to receive the gene therapy Luxturna. Jack’s sight is now significantly improved, and he can see in dimmer light, in greater detail and in colour.
Clinical trial launches to test the ability of a gene-agnostic therapy, similar to optogenetics, to restore vision in retinitis pigmentosa and choroideremia. FBC supports the development of related molecules through a grant to Dr. Richard Kramer.
Funding for Dr. Sachdev Sidhu aids in advancing a new drug for the treatment of AMD and diabetic macular edema (DME) to its first clinical trial.
More than 40 clinical trials are currently ongoing to test new treatments for IRDs
The Young Leaders Program brings together young adults with vision loss to learn new skills and build confidence, helping them better navigate their education and careers through mentoring.
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