On October 13, 2018, I attended Vision Quest in Edmonton at the Royal Alexandra Hospital’s Robbin’s Pavilion. This Conference is a great event with a lot of opportunities to catch up on the latest research news, learn new things and see what technology has to offer the visually impaired and blind community. It is the second Vision Quest that I have attended, and it certainly won’t be my last.
Dr. Mary Sunderland, Director of Research and Education for the Foundation Fighting Blindness, was our host and MC of the event. Dr. Sunderland is a warm, charming lady with a child-like enthusiasm for the work she does. I met Dr. Sunderland two years ago at my first Vision Quest and she has been an inspiration ever since.
The Foundation Fighting Blindness or FFB is a charitable organization with a focus on Retinal Eye Diseases such as retinitis pigmentosa, age-related macular degeneration (AMD), Stargardt disease, Usher syndrome, Choroideremia, Leber’s congenital amaurosis and other eye diseases. Below is a snippet from their website explaining just how incredibly important the work they do is.
“At the Foundation Fighting Blindness, it is our mission to lead the fight against blindness by advancing retinal disease research, education and public awareness, and ultimately restore hope and sight.
With the support of our donors, the Foundation Fighting Blindness has invested $30 million to support vision research across Canada, since 1974. That’s over 200 research grants that have led to over 600 new discoveries in exciting areas of study like: stem cell research, neuroprotective therapies, technological developments, pharmaceuticals and gene therapies. All research supports our goal of understanding why vision loss occurs, how it can be slowed or stopped, and how sight can be restored.
We are also a community. Diverse and thriving, we represent hundreds of volunteers, thousands of individuals and families affected by retinal eye diseases and scores of Canadian scientists seeking cures for blindness.”
Vision Quest is one of the ways that the Foundation Fighting Blindness spreads awareness and educates people affected by blinding diseases.
This year’s session was dedicated to the research of Dr. Ian MacDonald and his team. Dr. MacDonald spoke on the past and future of gene therapy in Canada. Having recently finished a clinical trial using gene therapy on Choroideremia patients that started off looking so promising but ultimately didn’t lead to the cure/treatment we all hoped for, Dr. MacDonald spoke of the lessons learned going through this process. Dr. MacDonald is another great advocate and deeply cares about his patients. The disappointment in the outcomes of this trial was evident in Dr. MacDonald’s presentation and yet he still gave hope that this wasn’t the failure one might think, but one step closer to a major breakthrough.
The panel of researchers included: Nicole Noel who discussed why animal models are important, a very funny Geoff Casey who told us how to get a gene into the human eye, Dr. Matthew Benson, on how does a genetic diagnosis lead to research on treatments, Stephanie Chan on what does it mean to be involved in a research study, Fay Zhai on how do tests measure retina structure, and a mellifluous – she seriously had the nicest voice Dr. Manlong Zi on how do tests measure retina function.
After a short break, there was a choice of three break-out sessions: Top Tech Tips, Coping with Vision Loss, and Independent Living Skills. I chose the Independent Living Skills with Stephanie Leach from The Vision Loss Rehabilitation Branch of the CNIB, which is now a separate charity from the CNIB as it has finally started to receive government funding to help blind patients learn to live independently again. There were all sorts of great tips and ideas with a friendly discussion with other participants as we exchanged our experiences, ideas and advice with one another.
In the lobby there were also several booths with even more information available:
AGTC was showcasing some of their clinical trials. This is an important researcher as they specifically target orphan diseases like RP –
“AGTC is a clinical-stage biotechnology company that uses its proprietary gene therapy platform to develop products designed to transform the lives of patients with severe diseases, with an initial focus in ophthalmology. AGTC’s lead product candidates focus on inherited orphan diseases of the eye, caused by mutations in single genes that significantly affect visual function and currently lack effective medical treatments.”
A representative from the Canadian Council of the Blind GTT (Get Together With Technology) had information about the initiative that helps blind and partially sighted residents explore and integrate assistive devices in their daily lives. For more information visit their website: www.ccbnational.net.
Canadian Assistive Technology allowed me to try IrisVision a very cool pair of goggles that allows low vision individuals to see distances. I can see a pair of these in my future! My love of footie and other sports supported once again by actually being able to see where the ball is on the field, not just where the action seems to be. These are a version of the device that gives the highest resolution display, with the best camera optics and the widest field of view at an affordable price. For more information and to look at some of their other product offerings please check out their site www.canasstech.com
And finally, we get to my favourite booth to visit every year – the AMI booth!! What is AMI you ask? Well, AMI stands for Accessible Media INC. They are the first television station in the world to broadcast all their content with the open format described video for the blind along with captions for the deaf. There is also AMI-audio that produces live programming geared toward the blind and partially sighted community. You can stream it at AMI.ca/ListenLive and download programs as podcasts through all major podcasting apps and platforms. There are also apps that you can use on the go to enjoy all the great content that AMI provides. If you love story as much as I do, then you owe yourself the favour of checking out all that AMI has to offer!
A couple of other very cools things happened at the conference, as these kinds of networking opportunities tend to do. I met a wonderful lady that has been involved in the sports and recreation programs for the blind for several years. I have been trying to find a way to bring the 1Touch Self-Defence program for the blind to Canada for over a year now. As soon as I started talking to this lovely lady and mentioned the program she was immediately excited to bring the program to Edmonton. Finally, a door opens which will bring a great program to Canada and it took meeting the right person at the right time. The second cool thing, I met a lot of nice people in the same boat as I am. A community is a great thing which is why I always enjoy the afternoon spent at Vision Quest Conferences.