The Foundation Fighting Blindness – Supporting Breakthroughs in Vision Research

May 16, 2013 | Eye Care |

Sight: it’s precious, irreplaceable and usually taken for granted until something happens to it.

 

Erin George first noticed changes to her vision when she moved to a new city for university. The then nineteen-year-old noticed she couldn’t see the professors’ chalkboard notes in the large university lecture halls. Then she realized she couldn’t see at night – while driving home on the 401 highway series… a truly frightening experience.

 

“My little sister and I were returning home from a Dave Matthew’s concert in Detroit,” shared Erin. “I had driven there in daylight, but driving home after the concert I couldn’t see the moment we left the city limits. It was terrifying. I followed the tail lights in front of me and barely made the turn-off for home. In hindsight I should have pulled off the road, but I didn’t know what was happening,” she said.

 

Erin spent the next six years seeing optometrists and ophthalmologists. She thought she needed the right prescription glasses to correct her night vision and improve her contrast sensitivity.

 

“I had no idea it was something serious,” said Erin.

 

Finally, when she was twenty-five, an astute optometrist suspected retinitis pigmentosa (RP). Several diagnostic tests and a referral to a retinal specialist later, the diagnosis was confirmed. Erin had a genetic, degenerative, retinal eye disease for which there was no treatment or cure. RP soon left her legally blind.

 

“I have a recessive form of RP, so there’s no family history,” said Erin. “My parents unknowingly have one genetic mutation each and when their DNA combined to make me I got both mutations.”

 

Erin had never heard of the rare eye disease that affects 1 in every 3,500 Canadians and she had no idea where to turn for information and support.

 

“When I was first diagnosed with RP I was very angry,” shared Erin. “There was no reason for it and I was told repeatedly there was nothing I could do.”

 

“I’m not someone who enjoys feeling powerless. I needed information, I needed support but most of all, I needed to do something,” she said.

 

Erin found what she needed in the Foundation Fighting Blindness, Canada’s largest charity funding sight-saving research.

 

“Through the Foundation Fighting Blindness, I learned more about my eye disease and the research into possible treatments and cures, I met other young people living with vision loss and – most importantly – I found a way to take action against the eye disease stealing my sight: Fundraising for research,” said Erin.

 

The Foundation Fighting Blindness funds Canadian researchers as they work to understand, preserve and restore vision for over one million Canadians affect by retinal eye diseases. Most of these retinal eye diseases are rare, such as Usher syndrome, Stargardt disease, Choroideremia, cone-rod dystrophy, the RP affecting Erin, and more. A more common retinal disease is age-related macular degeneration.  It’s the leading cause of vision loss for Canadians over the age of 50.

 

Founded in 1974 by a small group of parents whose children were losing their sight to RP, the Foundation Fighting Blindness has contributed more than $23 million to ground-breaking vision research at universities and hospitals across the country.

 

Vision Quest

 

In addition to funding research itself, the Foundation Fighting Blindness also provides information on retinal eye diseases and the latest research discoveries in easy to understand, accessible formats. The highlight of this work is the Foundation’s annual Vision Quest educational series held in cities across the country. Vision Quest 2013 will be held in Toronto (September 17), London (September 28), Vancouver (November 2) and Ottawa (November 9).

 

Vision Quest includes sessions on research discoveries, clinical trials, and daily living skills, as well as low vision products and services. It’s an opportunity for individuals and families living with vision loss to hear directly from Canada’s top vision researchers and clinicians and get their questions answered. Attendees report one of the best parts of Vision Quest is the opportunity to meet others affected by retinal eye disease.

 

“Vision loss can be an incredibly isolating experience, but through the Foundation and Vision Quest, I was able to meet peers who were going through many of the same things I was,” said Erin. “It makes such a difference for those of us losing our sight to know we are not alone.”

 

After attending a Vision Quest conference, Erin co-founded one of the Foundation Fighting Blindness’ now signature fundraising events, Cycle for Sight, as a way for people affected by retinal eye disease to raise funds for research.

 

“Cycle for Sight makes me feel like I’m doing something to stop RP – the dollars I raise from my family, friends, neighbours and co-workers, and the dollars raised by hundreds of other cyclists funds research that will one day find treatments and cures,” she said.

 

Thanks to its generous donors, sponsors, volunteers and event participants, the Foundation Fighting Blindness is Canada’s leading charitable funder of sight-saving research. Join one of the Foundation’s signature fundraising events or start your own!

 

Cycle for Sight

In June, cyclists – including visually impaired cyclists – will ride 60 to 140 km in support of vision research. Named Best Road Biking Event/Race in the Get Out There Magazine Readers’ Choice Awards, join Cycle for Sight in Ottawa (June 2) or Toronto/Collingwood (June 22). Register today at cycleforsight.ca.

 

Comic Vision

Share the laughter and see the hope at Comic Vision, a comedy tour featuring a line-up of hilarious Canadian comics. Get your tickets today for Comic Vision in London (April 23), Oakville (April 24), Toronto (April 25), Vancouver (May 1), and Calgary (May 2) at comicvision.ca.

 

Ride for Sight
It’s the longest running motorcycle charity fundraiser in Canada! Ride for Sight events are held across the country and each offers unique features, including show ‘n’ shines, barbeques, bike rodeos, stunt shows, marketplaces, live entertainment, motorcycle parades and free camping. This year, the Central Ontario Ride for Sight returns to Orillia for its 35th anniversary – a Father’s day long weekend bash headlined by Big Sugar. Learn more at rideforsight.com.

 

To learn more about the Foundation Fighting Blindness and connect your patients with educational resources on retinal eye disease call 1.800.461.3331, email info@ffb.ca, visit ffb.ca or find the Foundation Fighting Blindness on Facebook, Twitter and YouTube.