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 in Canada 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

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 . 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 , of ‘bionic eye’ TODAY AT FFB.CA OR CALL developing new 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 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 . 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 deliver life- Moving research from the laboratory into the changing results.” POWER TO DELIVER clinic takes time, dedication, patience, planning, and a broad network of supporters. In 1985, This pioneering clinical trial paves the way for LIFE-CHANGING the Foundation began funding Dr. MacDonald’s the future of gene therapy in Canada, which is choroideremia research. He localized the gene vital because of the tremendous potential for to a particular portion of the X chromosome gene therapy to treat a variety of blinding eye RESULTS. and helped to develop the first predictive test. diseases. Thanks to the Foundation’s donors, we In 2015, with support from the Foundation, Dr. expect to see many more applications of gene “ MacDonald launched Canada’s first gene therapy therapy to treat vision loss in the coming years, clinical trial for choroideremia at Edmonton’s including creative approaches that combine the Royal Alexandra Hospital. The trial aims to latest innovations in gene therapy with stem cell Photo: L-R: Dr. Riz Somani, Dr. Matt Tennant, Dr. Ioannis (John) Dimopoulos, Prof. Robert MacLaren, preserve and potentially restore vision for people science and gene editing. Dr. Ian MacDonald, Janice Hengsbach RN, Dr. Markus Groppe and Dr. Paul Freund. 7 2015 FUNDRAISING EVENTS VISION QUEST 2015 RIDE FOR SIGHT COMIC VISION CYCLE FOR SIGHT IMAGINING A BRIGHTER FUTURE

Every year, people across Canada join the Our annual education event brought together scientists, clinicians, and individuals and fight against blindness by participating in families living with vision loss, to imagine a brighter future. We visited five great our signature fundraising events: Ride for Canadian cities: Sight, Comic Vision and Cycle for Sight. Thousands of motorcyclists, comedy fans VANCOUVER | LONDON | TORONTO | MONTREAL | HALIFAX and cyclists coast-to-coast fundraise for vision research, helping to restore hope and sight. CYCLE FOR SIGHT

cycleforsight.ca 554 $2,057,390 1000+ ATTENDEES 339

RAISED ACROSS CANADA 237 67

130+ 3409 17 VOLUNTEERS

PARTICIPANTS EVENTS COMIC VISION NATIONWIDE 56

15 9 Experts Healthcare Donors New Caregivers Patients SPEAKERS comicvision.ca Participants in Corporate Stakeholder our first-ever Partners Engagement 352 58 47 Young Leaders EXHIBITORS Summit EVENT CORPORATE VOLUNTEERS SPONSORS 10% To help build a better future, we asked our attendees 10% 17% to take action. Here’s how 530 attendees want to contribute to the fight against blindness: TAKING 13,000 12.1 MILLION ACTION Share their story Volunteer RIDE FOR SIGHT EVENT MEDIA % OF 530 Raise awareness Join the Patient Registry DONORS IMPRESSIONS 35% Mentor a young person with vision loss rideforsight.com 28%

8 9 2015 LEADERSHIP DONORS 2015 EVENT SPONSORS

Thank you to our generous Leadership Donors: individuals, corporations and foundations who Fundraising and educational event sponsors are integral partners of the Foundation and made philanthropic gifts of $5,000 or more in 2015. Your loyal support funded vital research to essential to our success. Your commitment, generosity, and participation at each of our events preserve and restore sight. is staggering. We are grateful to all of our sponsors but have only listed $5,000+ sponsors here.

$250,000+ Joan and Clifford Hatch Foundation $50,000+ $5,000 - $9,999 Anonymous (1) David Hawkins Accessible Media Inc. Brown Foreman Estate of Joyce Conn Heathbridge Capital Management Bayer Inc. eSight Krembil Foundation Dr. Elise Héon Expedia Canada Corporation Ossie Hinds and Anne La Rocque $25,000 - $49,999 GAMMA Sales Inc. $100,000+ (E.) Ben Hochhausen BMO Financial Group L’Occitane Donna Green Kathryn Holden CIBC Independent Financial Concepts Group Malcolm Hunter Deeley Harley-Davidson Canada TELUS $25,000 - $49,999 Jean Ip Novartis Pharmaceuticals (Canada) Inc. Tridel Alcon Canada Inc. Ron Lalonde and Jane Humphreys Sirius XM Canada Inc. Mark and Shelagh Anson Pascal Lavoie TD Securities Inc. In Kind Event Sponsorship Estate of Earnest Bradshaw Gideon and Kari Leoganda ($5000+) Deeley Harley-Davidson Canada Beth Malcolm $10,000 - $24,999 Air Canada Foundation Renate Greenwood Nancy MacKellar Allergan Inc. Bochner Eye Institute Ledcor Group of Companies Paul and Mary Oster Peller Estates Kernals Popcorn Limited Estate of Gurli Harriet Louw Nielsen Deep Patel Echelon General Insurance Company Knar Jewellery Estate of Doreen Powles Estate of Vaughnie Pinck Essilor Four Seasons Hotels Estate of Donald Julian Scott Glen and Rita Popowich IBM Dave Lede Family Charibtale Foundation Dr. Bill and Kathie Stell Frances and Tim Price Ledcor Group of Companies Brian and Marion MacDonald Bruce Wise Estate of Barbara Else Redlich Onward Manufacturing James Riley and Nicole Sigouin Dr. Raymond Stein and Nancy Viner $5,000 - $24,999 Cam and Michelle Robinson Robin and David Young Estate of Jeanne Eunice Adams Anita and Norm Rolleman Allergan International Foundation Marcelle Roy 2015 MONTHLY DONORS Anonymous (2) Cookie and Stephen Sandler Anonymous (3) George Sheen We are so grateful to all of our Monthly Donors who generously provide critical and stable Anonymous (4) Shorcan Brokers Limited funding for sight saving research every month. In 2015, our dedicated monthly donors Dr. Michael Brent Sick Kids Foundation contributed enough to fund a research project for 18 months. Christine and Andrew Burke Robert Simmons Arthur J.E. Child Foundation Estate of Sally Cohen Standard James Collins Dr. Raymond Stein and Nancy Viner 136 673 $1000 $165,400 Jane Collins David and Donna Sweeny Bill and Cindy Court David and Deborah Tennant NEW TOTAL LARGEST 2015 Gay Evans Trev Deeley Foundation MONTHLY MONTHLY MONTHLY TOTAL Jennifer Hancock and John Markell Clayton and Linda Woitas DONORS DONORS DONATION REVENUE

10 11 2015 FINANCIALS SOURCES OF REVENUE

The Foundation Fighting Blindness continues to be Canada’s largest health charity funding breakthrough vision research, thanks to the ongoing commitment of our donors, volunteers, researchers and families living with blinding eye diseases. 2% 6%

In 2015, the generosity of our 21,762 donors and the commitment of our 482 volunteers 13% generated a gross revenue of over $4.7 million. 19% Other Gifts (6%) In total, over $2.1 million was allocated to achieve our mission, including more than $1.74 million to the funding and oversight of 28 vision research projects across the country. One-Time / Monthly Donors (13%) REVENUES 2015 2014 Planned Giving / Bequests (9%) 9% Fundraising Events $2,339,193 $2,325,289 Gifts & Bequests $2,301,550 $2,008,327 Major Gifts (26%) Investment / Interest $90,721 $233,648 Cycle for Sight (16%) TOTAL $4,731,464 $4,567,264 10% Ride for Sight (10%) MISSION SPENDING 2015 2014 Comic Vision (19%) Research $1,741,614 $2,063,017 Education $359,529 $348,598 Investments & Other (2%) 26% TOTAL $2,101,143 $2,411,615 16%

By 2011, the Foundation Fighting Blindness had accumulated a significant surplus due to a number of unexpected large gifts in prior years. In keeping with the wishes of our donors, the Foundation used the surplus to invest more heavily in research from 2012 to 2014. In 2015, the Foundation resumed balanced budgeting, resulting in a lower mission expenditure compared to 2014. COMPARISON OF REVENUE FUNDRAISING & 2015 2014 TO MISSION SPENDING ADMINISTRATION EXPENSES

Administration $698,461 $702,319 REVENUES 2015 2014 Fundraising - Events $1,176,960 $1,322,796 Total Revenue $4,731,464 $4,567,264 Fundraising - Gifts & Bequests $684,815 $678,062 Net Revenue of Event / Fundraising Costs $2,869,689 $2,566,406 TOTAL $2,560,236 $2,703,177 Total Mission Spending $2,101,143 $2,411,615

12 13 BOARD OF DIRECTORS

The Foundation Fighting Blindness Board of Directors is comprised of extraordinary and dedicated individuals who generously volunteer their time to guide the Foundation in its mission.

EXECUTIVE COMMITTEE BOARD MEMBERS

Andrew Burke (Chair) Michel Cayouette, PhD David Drury Joe Grech (Vice-Chair) Sherif El-Defrawy, MD, PhD, FRCSC Rahn Dodick (Treasurer) Peter Farmer Jane Humphreys Malcolm Hunter (Corporate Secretary) Peter J. Kertes, MD, CM, FRCSC Gary Mandel John Breen (Executive Officer) Michael Ovens Catherine Tillmann (Executive Officer) Lorna L. Rosenstein George Sheen Donna Green (Past Chair) Raymond M. Stein, MD, FRCSC David D. Sweeny Deborah Tennant

SCIENTIFIC ADVISORY BOARD

The Foundation Fighting Blindness Scientific Advisory Board is comprised of exceptional scientists actively engaged in sight-saving research. They volunteer their time and scientific leadership to evaluate research grant applications and support our education programs.

Michel Cayouette, PhD (Chair) Sylvain Chemtob, PhD Institut de recherches cliniques Maisonneuve-Rosemont de Montréal (IRCM) Hospital Research Centre

Seth Blackshaw, PhD Ordan Lehmann, PhD John Hopkins University School of University of Alberta Medicine Brian Link, PhD Rod Bremner, PhD Medical College of Wisconsin Lunenefeld-Tanenbaum Research Institute, Mount Sinai Hospital Orson Moritz, PhD University of British Columbia

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