ANNUAL REPORT 2015 OUR VISION TO RESTORE HOPE AND SIGHT OUR MISSION TO LEAD THE FIGHT AGAINST BLINDNESS BY ADVANCING RETINAL DISEASE RESEARCH, EDUCATION AND PUBLIC AWARENESS TABLE OF CONTENTS MESSAGE FROM THE PRESIDENT & CEO and BOARD CHAIR MESSAGE FROM THE PRESIDENT & CEO 1 and BOARD CHAIR 2 RESEARCH MOVING VISION Sharon Colle, Andrew Burke, 4 SCIENCE FORWARD President & CEO Board Chair Dear Friends, A CANADIAN FIRST 7 For the Foundation Fighting Blindness, 2015 was a break-through year. Committed supporters like you funded the very first gene-therapy clinical trial for an eye disease in 2015 Canada. Over four decades of dedication and research led to this critical FUNDRAISING EVENTS 8 turning point. VISION QUEST 2015 This clinical trial is just one of the many shining examples of incredible milestones that 9 demonstrate the accelerating pace of vision research. We will be able to go further, faster, thanks to you. 2015 10 LEADERSHIP DONORS In 2015 alone, your generosity supported a total of 28 ongoing research projects across Canada for a total investment of $1.64 million. Thank you! 2015 CORPORATE 11 EVENT SPONSORS Finding treatments and cures for blinding eye diseases is now possible, and the impact of & MONTHLY DONORS these discoveries for Canadians living with vision loss will be life changing. As we move forward, we must intensify our efforts, and lean in to the fight against blindness. 12 2015 FINANCIALS It’s up to us, together, to turn our tremendous hope into reality. Sincerely, BOARD OF DIRECTORS & 14 SCIENTIFIC ADVISORY BOARD Sharon Colle Andrew Burke President & CEO Board Chair 1 Research Sites Our Patient Registry Sites 2014 Vision Quest Events RESEARCH DR. BERNIER Your support funded 28 ongoing research projects across the country in 2015 – over $1.64 million in sight-saving research to restore hope and sight. Dr. Gilbert Bernier developed a highly effective technique Dr. Gautam Awatramani Dr. Jean-Sébastian Joyal Dr. Orson Moritz for producing light-sensitive University of Victoria CHU Sainte-Justine University of British Columbia photoreceptors from human Uses light-sensing molecules Studies sugars/lipids in the Studies valproic acid and its stem cells, paving the way for to manipulate vision cells eye to develop drug therapies potential treatment of RP transplantation therapies. Dr. Gilbert Bernier Dr. Robert Koenekoop Dr. Andras Nagy Hôpital Masionneuve- Montreal Children’s Hospital Mount Sinai Hospital Rosemont Identifying gene mutations Combining gene and stem Developing photoreceptors causing childhood blindness cell therapies to treat AMD for transplantation Dr. Rod Bremner Dr. Bruno Larrivée Dr. Stéphanie Proulx Mount Sinai Hospital Université de Montréal Université Laval Harnessing the eye’s ability Developing more effective Developing mechanisms to DR. MACDONALD to regenerate AMD treatments transplant retinal cells With Foundation support, Dr. Ian MacDonald at Dr. Michel Cayouette Dr. Ian MacDonald Dr. Christian Salesse the University of Alberta Institut de recherches University of Alberta Université Laval cliniques de Montréal Leading the first human Studies an eye protein launched the first-ever Examines the fundamental clinical trial of a treatment necessary for vision human trial of an ocular mechanics of photoreceptors for choroideremia in Canada gene therapy in Canada. Dr. Mahyer Etminan Dr. Sarah McFarlane Dr. Mike Sapieha University of British Columbia University of Calgary Hôpital Masionneuve- Examining how prescription Tracking the movements Rosemont drugs may influence of damaged eye cells Studies compounds that AMD risk could protect nerve cells Dr. Cheryl Gregory-Evans Dr. Philippe Monnier Dr. Valerie Wallace University of British Columbia Toronto Western Hospital University Health Network Developing an eye drop to Developing new drugs to stop Funded for photoreceptor repair damaged retinal cells damaged cells from dying transplantation studies Nine Foundation-funded research projects concluded in 2015. Dr. Belinda Chang Dr. Kevin Gregory-Evans Dr. David Picketts University of Toronto University of Ottawa Hospital British Columbia Research Institute Dr. Robert Devenyi Dr. Perry Howard Dr. Uri Saragovi Toronto Western Hospital University of Victoria Lady Davis Institute for DR. NAGY Medical Research Dr. Andras Nagy’s team engineered Dr. Robert Gendron Dr. Saeed Khalili Dr. Catherine Tsilfidis stem cells to secrete a sight-saving Memorial University University of Toronto Ottawa Health drug that they are testing as a one- Research Institute time treatment for age-related macular degeneration. Four Patient Registry Enrollment were funded at: IWK Children’s Hospital (NS), SickKids (ON), University of Alberta (AB), Vancouver General Hospital (BC) 2 3 MOVING VISION SCIENCE FORWARD 2015 RESEARCH HIGHLIGHTS & THE ROAD TO TREATMENTS treatments are evaluated for their safety and efficacy in people. If successful, we are Your support in 2015 helped move important research along the path from the laboratory rewarded with new sight-saving treatments. Below you’ll find the notable projects we toward the clinic. This path of four overlapping stages starts with Discovery Research, funded in 2015 in each of these stages, as well as how our education and advocacy efforts progresses to Pre-Clinical Research and then into the Clinical Trial phase, where potential are contributing to moving sight-saving science forward - all thanks to you! DISCOVERY RESEARCH PRE-CLINICAL RESEARCH CLINICAL TRIALS SIGHT-SAVING TREATMENTS Discovery Research underpins Pre-clinical Research is Clinical Research involves If successful in the clinical all new treatments by directly focused on collecting testing a new therapy on stage, treatments have the generating knowledge information to enable a people to analyze its efficacy opportunity to become required for therapeutic specific treatment approach and safety. publicly available. intervention. to be tested in people. New Research Exciting Clinical New Discoveries EDUCATION / ADVOCACY 42 23 Tools Designed 2 Research Trials PATIENT EVIDENCE Our funded scientists made 42 Our funded scientists created These two projects are our We submitted new discoveries in 2015. 23 new tools to fuel research. first funded clinical trials. patient feedback to government agencies 2015 Highlights: 2015 Highlights: 2015 Highlights: and advocated for DR. BERNIER DR. MACDONALD access to treatments. DR. AWATRAMANI Developed a new Commenced Canada’s Discovered how tool for mass- first-ever human VISION QUEST motion and spacial producing human gene therapy trial Our annual education information are photoreceptors for a blinding eye conference visited stored in the vision from stem cells for disease. This study five Canadian cities, pathway. transplantation. used our Patient involving 1100+ Registry to select trial participants. participants. DRS. KOENEKOOP DR. SARAGOVI & CAYOUETTE Developed tools ARGUS II Discovered a new to show that two YOU CAN CONTINUE TO blindness-causing new proteins slow Ongoing HELP INCREASE THE PACE gene that will the progression of observational trial OF RESEARCH. DONATE be essential for retinitis pigmentosa, of ‘bionic eye’ TODAY AT FFB.CA OR CALL developing new glaucoma and doubles number 1.800.461.3331 EXT. 262. treatments. diabetic retinopathy. of participants. 4 5 A CANADIAN FIRST PIONEERING GENE THERAPY TRIAL FOR INHERITED BLINDNESS Will gene therapy be an effective treatment for with this genetic disorder. Dr. MacDonald says blinding eye diseases? Many people who live he’s “absolutely impressed” by the eye’s ability with vision loss are waiting for an answer while to heal itself and reattach the retina within hours scientists and clinicians test different approaches of surgery. “The human body is doing its work. to gene therapy that aim to replace damaged We’re just helping it.” genes with new, functional copies. The first clinical trials for choroideremia took In 2015, Foundation Fighting Blindness donors place at the University of Oxford. In 2014, early supported Canada’s first gene therapy clinical results in The Lancet Medical Journal reported trial for choroideremia, a rare blinding eye that six months after treatment, the first six condition that travels through families on the X patients showed improvement in their vision in chromosome. An affected man has a 50 percent dim light; and two of the six were able to read chance of passing the damaged gene to his sons, more lines on an eye chart. The ongoing Oxford and his daughters will be carriers of the disease. trial, led by ophthalmologist Dr. Robert MacLaren, continues to deliver promising long-term results. In the 1980s, scientists did not know what caused To ensure that the Canadian trial learns from choroideremia, but there was a clear inheritance the Oxford study, Dr. MacDonald is collaborating pattern. Dr. Ian MacDonald was inspired to study closely with Dr. MacLaren, who traveled to the disease by Barbara Owens, whose family was Alberta to help with the Canadian clinical trial. affected. A family tree enthusiast, Ms. Owens identified an affected ancestor who had arrived “This new step forward is extremely meaningful,” in Ontario in 1849. Building on her information, says Sharon Colle, FFB President & CEO. “From Dr. MacDonald was able to trace the genetic the beginning, we believed in Dr. MacDonald’s inheritance of the disease by identifying 1,800 research. This trial affirms the Foundation’s RESEARCH HAS THE family members. long-term commitment to research because it shows that research has the power to