Art is Her Best Friend

Yvonne is living her dream. She is an artist, dedicated to raising awareness and funds for vision research.

Meet Molly Burke, FFB Youth Ambassador

Youth Ambassador

Molly Burke is a youth ambassador for the FFB, educating the public about living with blindness while delivering a message of hope to those living with vision impairment.

Meet Norma Bastidas, mom on a mission

Mom on a Mission

Norma is the second person in history to run 7 of the planet's most unforgiving environments on 7 continents in 1 year in support of vision research. Read her about incredible journey.

Meet Dale Turner, proof that research does work

Miracles do happen

Dale Turner is the first Canadian to receive an experimental treatment and have some sight restored by gene therapy. Dale is proof that investing in research works.

Clinical Trials

As vision research advances, clinical trials are beginning in Canada. Here are a few Canadian trials involving people living with retinal degenerative diseases. Are you a Canadian clinician scientist who would like to share information about your study? Please send your information to info@ffb.ca and we would be happy to post it here.

For a more comprehensive listing of clinical trials please visit www.clinicaltrials.gov. This clinical trials registry is supported by the American government and lists trials happening all around the world for a broad range of conditions. You can search for a particular condition or treatment and, if you wish, can limit your search to trials happening in Canada.

 

Do You Have Choroideremia?
Genetic Risk Communication: Case Study of Gene Therapies for Retinal Dystrophies

The Study: We are conducting a study about communicating genetic risks for hereditary eye conditions with the Departments of Public Health Science and Ophthalmology at the University of Alberta, Canada.

Participants: We are recruiting patients who are affected by choroideremia (affected males). All participants must be over the age of 18. You will be interviewed for roughly 45 minutes to an hour about where you get information about your eye condition, how you balance living with your eye condition and how you feel about gene therapies.

Confidentiality: Your responses will be de-identified or described in the aggregate and therefore remain confidential.

Consent: Your participation in this research project is voluntary. You may decide if you would like to participate with no consequence to your clinical care. Additionally, participation in this research project will not promote preferred access to therapeutic interventions.

Please contact Shelly Benjaminy at sbenjami@ualberta.ca or 1 (780) 492-0392. An information sheet about the trial including a consent form is available here.

 

AMD Vision Study

Age-related macular degeneration (AMD) is the leading cause of blindness in Canadians over 50 - and with our aging population, the number of patients is growing fast. The most common kind of AMD (dry AMD) typically starts with few noticeable symptoms. This makes it critically important to identify people with dry AMD as early as possible so that they can protect themselves with nutrition changes, by regularly wearing sunglasses and with other lifestyle adjustments. It is also important for at-risk people to be monitored for any signs of wet AMD.

Scientists based at McMaster University in Hamilton, ON, are evaluating a new visual testing tool for early dry AMD. The team includes neuroscientist Dr. Kathryn Murphy, ophthalmologist Dr. Varun Chaudhary and Dr. David Jones of Pairwise Affinity Inc., who developed this new vision test. It uses a digital image that looks like snow on an old-fashioned TV to identify early vision changes. Participants are asked whether the snow is in vertical or horizontal lines. Dr. Chaudhary and his team are looking for people who know they have dry AMD as well as volunteers (over age 18) without any vision problems to take the test.

Participants will be tested at St. Joseph’s Healthcare Hamilton. It will take about 90 minutes and participants will be reimbursed up to $20 for travel and parking. See the study website for details.

 

A Safety/Proof of Concept Study to Evaluate the Effects of Oral QLT091001 in Subjects Due to RPE65 or LRAT Mutations

QLT091001 is an oral medication specifically designed to treat patients with genetic mutations in either retinal pigment epithelium protein 65 (RPE65) or lecithin:retinol acyltransferase (LRAT).  Mutations in these genes may be present in people with either LCA or retinitis pigmentosa. The treatment aims to replace a biochemical substance, 11-cis-retinal, which is key to healthy vision. This substance is absent in people with these gene defects. The therapy, currently known as QLT091001, is being developed by the Canadian biotechnology company QLT Inc. The trial is being led by Dr. Robert Koenekoop of The Montreal Children's Hospital.

There are at least 300,000 patients with retinitis pigmentosa worldwide, of which less than 5% carry inherited deficiencies in either RPE65 or LRAT. Only these individuals might potentially benefit from this trial. The phase 1 trial will recruit up to 24 patients with LCA or retinitis pigmentosa who carry the appropriate RPE65 or LRAT mutations. All participants will receive daily oral treatments of one of two doses of QLT091001 for seven days at The Montreal Children's Hospital at the McGill University Health Centre, Montreal, Canada under the supervision Dr. Koenekoop. The primary purpose of this early trial is to ensure that this treatment is safe and to establish an appropriate dosage for a larger trial.

For more information about this trial please contact the study's Research Coordinator, Eunice Esteban, at eunice.esteban@yahoo.com  or (514) 758-7724.

 

Dose Ranging Study of Pazopanib to Treat Neovascular Age-related Macular Degeneration

This is a phase 2 dose-ranging study designed to determine whether or not pazopanib eye drops are safe and effective to treatment neovascular (wet) age-related macular degeneration (AMD). It is intended for people whose wet AMD is currently managed by anti-VEGF (vascular endothelial growth factor) injection therapy. The study will evaluate different dosages of pazopanib and some participants will also receive a placebo (with no active drug). More details about this trial.

This study is currently recruiting participants in Halifax, NS, and London, ON. Contact the GlaxoSmithKline (GSK) Clinical Trials Call Center at 1 (877) 379-3718 or GSKClinicalSupportHD@gsk.com.   

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