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WELCOME

We’re excited to have you join us for our View Point educational series. This is where physicians, vision health researchers and scientists, industry partners and people with lived experience come together to collaborate and share knowledge about the latest advancements in vision loss research and community resources.

This year marks a significant milestone for Fighting Blindness Canada — our 50th Anniversary. To celebrate, we launched ‘Spotlight on Sight’, to showcase the incredible impact we’ve made together, thanks to the unwavering support and dedication of our community of vision loss champions. We invite you to explore the Spotlight on Sight website, where you’ll discover inspiring stories from our community and key moments from the past 50 years. We also encourage you to share your stories at fightingblindness.ca/spotlight.

Today, we have an exciting program where you will hear from our keynote speaker Dr. Daniel Chung, Chief Medical Officer at SparingVision. Dr. Chung will provide an in-depth overview of gene-agnostic therapies. You can also choose from two concurrent sessions featuring vision research experts Dr. Brian Ballios and Dr. Parnian Arjmand, who will provide overviews and answer questions on inherited retinal diseases and age-related vision loss. Our closing panel will explore the complexities of living with vision loss through the lens of advocacy.

We also invite those between 15 and 35 years old to join our Young Leaders program sessions tailored to help you envision a bright and inclusive future.

These community education and engagement events are possible because of our long-time donors. Thanks to your support, we are the largest charitable funder of vision research in Canada. Over the past 50 years, we have invested more than $45 million in research and educational programs thanks to our generous donors and partners.

Finally, I want to acknowledge View Point National Presenting Sponsor: Bayer, and our National Partners: AbbVie, Apellis, Astellas, Beacon Therapeutics, Biogen, Johnson & Johnson, Novartis and Roche, as key partners in our fight to prevent vision loss and restore sight.

I look forward to meeting you throughout our day together and I am honoured to be working alongside the vision loss community.

Jennifer Jones
President and CEO
Fighting Blindness Canada

spotlight on SIGHT

• JOIN US IN CELEBRATING 50 YEARS OF PUTTING SIGHT-SAVING RESEARCH IN THE SPOTLIGHT. Through groundbreaking research, innovation, and advocacy, we have invested more than $45M in research and educational programs that have improved the sight and lives of countless people, and propelled us towards a brighter future. Learn more at: Learn more at: fightingblindness.ca
• VOLUNTEER WITH US! Interested in joining our dedicated community? Learn about volunteer opportunities at: info@fightingblindness.ca

View Point Toronto Program

Saturday, September 28, 2024
Toronto Reference Library

View Point programming will be held in the Bram and Bluma Appel Salon on the second floor

1:00-2:00 p.m.: Registration & Community Resource Fair
Bram and Bluma Appel Salon
Visit our Community Resource Fair and enjoy light refreshments. Seating is first come, first served.

2:00-2:15 p.m.: Welcome Remarks
Epic Hall
Jennifer Jones, President & CEO, Fighting Blindness Canada and Morgan Ineson, Senior Manager, Education, Fighting Blindness Canada.

2:15-3:00 p.m.: Gene-Agnostic Therapy with Dr. Daniel Chung
Epic Hall
One of the key challenges with gene therapy is that treatments need to be customized for each specific gene mutation. However, there is increasing excitement around a new class of treatments, known as gene-agnostic therapies, that target common causes of retinal degeneration or try to prevent vision loss independent of the genetic cause. This approach could offer benefits to many people living with
an inherited retinal disease (IRD). In this session, Dr. Daniel Chung, Chief Medical Officer at SparingVision, will provide an in-depth overview of gene-agnostic therapies. He will discuss the types of therapies currently under investigation, how they operate, and the potential benefits and challenges associated with this innovative approach.

3:00-3:15 p.m.: Snack Break
Epic Hall & Prologue
Enjoy a selection of baked goods and visit our Community Resource Fair.

3:15-4:00 p.m. CONCURRENT SESSIONS (please choose one session from the following list):

Ask the Expert – Inherited Retinal Diseases (IRDs)
Featuring Dr. Brian Ballios
Epic Hall
There are over 20 inherited retinal diseases including retinitis pigmentosa, Stargardt disease, Usher syndrome, and Leber congenital amaurosis. Being diagnosed with one of these conditions can be challenging, and you may have many questions about your care, or what treatments are available or currently being studied. Dr. Brian Ballios will give an overview of IRDs and answer your questions.

Ask the Expert – The Aging Eye
Featuring Dr. Parnian Arjmand
Novella
Are you or a loved one living with age-related vision loss? Do you have questions or concerns about your condition? We will sit down with Dr. Parnian Arjmand to learn more about different age-related eye conditions including wet and dry age-related macular degeneration (AMD), and current treatments and therapies. There will be opportunities to ask your questions.

4:00-4:15 p.m.: Break
Epic Hall & Prologue
Stretch your legs and enjoy a coffee or tea while visiting our Community Resource Fair.

4:15-5:00 p.m.: Voices of Change: Transforming Lived Experience into Action
Featuring Alicia Chenier, Dave Brown and Mary Campbell
Epic Hall
Join us for an insightful session exploring the intersection of advocacy and lived experience. You will hear from individuals who have navigated both the challenges and triumphs of living with vision loss, and learn how these firsthand experiences can inform and drive meaningful advocacy. Whether you are a community member, advocate, or ally, you will gain practical insights on how to amplify your voice and create impactful change.

5:00-5:15 p.m.: Closing Remarks
Epic Hall

5:15-6:00 p.m.: Social Hour
Epic Hall & Prologue
Meet members of the vision loss community, their families and friends and make new connections. Wine, cheese and a selection of hors d’oeuvres will be served.

Meet The Speakers

ben akuoko

Ben Akuoko is an individual who lives with partial sight due to retinitis pigmentosa. He is a registered social worker, with a Social Service Worker diploma from Sheridan College, a Social Work degree from Laurentian University and a Masters of Social Work from the University of Waterloo. Ben currently works at the CNIB as an advocacy and accessibility Program Lead for Ontario West. He is a huge advocate in highlighting the importance of intersectionality in terms of race, ethnicity, gender, sexual orientation and disability. Ben is a firm believer that diversity, equity, inclusion, and accessibility should be top points of discussion in the community of individuals living with disabilities. In his spare time, he enjoys making hip hop and R&B music, podcasting, dancing, running, and weight training.

Dr. Parnian Arjmand

Dr. Parnian Arjmand, M.D., M.Sc., FRCSC is a vitreoretinal surgeon and specializes in treating medical and surgical retinal conditions. A native of Toronto, Dr. Arjmand completed her undergraduate and graduate studies at the University of Toronto in the immunology specialist program, followed by medical school at McMaster University and ophthalmology residency at the University of Ottawa. Subsequently, she completed a two-year vitreoretinal surgery fellowship at the University of Toronto (Sunnybrook and Toronto Western Hospital) in June 2021, where she also served as the chief fellow. She currently works at the Mississauga Retina Institute, Burlington Laser Eye Centre, and Baycrest Health Sciences Centre.

Dr. Arjmand is the recipient of numerous clinical awards and research grants, and has published several book chapters, editorials, and numerous peer-reviewed research articles. She is double board-certified by the American Board of Ophthalmology and the Royal College of Physicians and Surgeons of Canada.

DR. BRIAN BALLIOS

Dr. Brian Ballios is a fellowship-trained clinician-scientist, with a focus on medical retinal disease and a subspecialty in inherited retinal disease. He is an Assistant Professor in the Department of Ophthalmology and Vision Sciences at the University of Toronto. He holds appointment as clinician-scientist at the University Health Network in the Donald K. Johnson Eye Institute, and is a staff physician at Sunnybrook Health Sciences Centre and the Kensington Vision and Research Centre. Dr. Ballios is also a scientist at the Krembil Research Institute where he has a laboratory investigating the mechanisms of acquired and inherited retinal disease, and the development of new stem cell-based therapies. He obtained his M.D. and Ph.D. degrees at the University of Toronto in the combined M.D./Ph.D. program.

DIANE BERGERON

Diane Bergeron is the President of CNIB Guide Dogs and plays a pivotal leadership role in the World Blind Union (WBU), serving as both Treasurer of the WBU and Chair of the WBU Women’s Committee. As President of CNIB Guide Dogs, Diane’s leadership approach focuses on the handler perspective as she directs and oversees policies and procedures for the program. She has been a guide dog handler for 40 years and shares a profound bond with her CNIB Guide Dog, Carla. Diane resides in Ottawa, ON, where she enjoys fitness activities (as a past Ironman triathlon finisher!), camping and learning to play guitar.

DAVE BROWN

Dave Brown is the Host of NOW with Dave Brown on AMI TV, a daily TV talk show that explores real world events through the lens of disability and inclusion. Born with albinism and legally blind, Dave has been working in the broadcast industry for over 10 years, and has had the chance to make documentaries, host shows, and interview thousands of people. Broadcasting is Dave’s passion and he is grateful for every opportunity he gets to connect with people. He first fell in love with radio while listening to his Sony Walkman late at night when he was supposed to be sleeping. Dave makes his home in North York, ON and beyond broadcasting, he has a passion for sunglasses, fantasy football, and deep-fried cheese.

MARY CAMPBELL

Mary Campbell, RN, B.Sc.N., is a retired nurse who lives in Toronto.
A University of Toronto alumnus, she was diagnosed with wet AMD at age 65 in 2012. Due to unfortunate delays in treatment, she lost all of her central vision in her left eye. Six years later, she developed wet AMD in her right eye and was treated immediately, enabling her to preserve her vision. Mary keeps up to date with the latest AMD research in the hopes that her three adult children and six grandchildren will not be affected in the future. In her spare time, she enjoys reading, gardening, keeping fit with exercise classes, theatre and music.

ALICIA CHENIER

Alicia Grace Chenier is a motivational speaker, aspiring actor and college graduate who is currently pursuing a university degree in disability studies. A brain tumor survivor, chronic illness warrior and disability advocate, Alicia has lived through more lifetimes than the average 25-year-old. After losing most of her vision at a very young age, she dedicates her time to raising awareness about disability and sharing her story, while advocating for greater accessibility, equal access and inclusivity in her city and beyond. Alicia’s life motto is “blind girl in a sighted world”, adapting to navigating the world and living well with sight loss, and she will never lose her vision to create change.

DR. DANIEL CHUNG

Dr. Daniel Chung is the Chief Medical Officer for SparingVision, an ocular genomic medicine company, focusing on gene-agnostic gene therapy and CRISPR gene editing approaches to combat blinding eye diseases. Prior to SparingVision, Dr. Chung was the Ophthalmology Therapeutic Leader for Spark Therapeutics, where he led the medical affairs group and contributed to areas of clinical development and operations, marketing, commercial, patient advocacy, pre-clinical research, development and business development. He was closely involved with the development of Luxturna, the first gene therapy approved by the FDA for use in a blinding eye genetic disease, and the first-ever sight-restoring gene therapy approved by Health Canada. Earlier in his career, Dr. Chung worked in retinal gene therapy at the Scheie Eye Institute, University of Pennsylvania. He also served as a sub-PI on the RPE65 gene therapy clinical trial at the Children’s Hospital of Philadelphia (CHOP), and he made major contributions to the development of the Phase 3 MLMT novel endpoint. Dr. Chung completed his ophthalmology residency in Akron, Ohio, followed by fellowships in pediatric ophthalmology and ocular genetics research at the Cole Eye Institute at the Cleveland Clinic, and in retinal gene therapy at the National Eye Institute/NIH.

DR. ESTHER IGNAGNI

Dr. Esther Ignagni is the director of Toronto Metropolitan University’s School of Disability Studies and is serving as interim director of the School of Social Work. At TMU, she also serves on the Universal Design in Learning Committee, School of Medicine Interprofessional Education & Collaborative Practice Working Group, Learning & Teaching Grants Adjudication Committee, FCS Teaching Standards Committee and Academic Standards Committee. Dr. Ignagni has led several curriculum innovations, including those that support the school’s unique online delivery for distance students. She led and collaborated on the creation
of open educational resources, community and industry collaborations, anti-racist and decolonial curriculum reviews, and interprofessional education initiatives. Dr. Ignagni holds a Ph.D. from the Dalla Lana School of Public Health Sciences, Faculty of Medicine at the University of Toronto.

dr. NAHEDA SAHTOUT

Dr. Naheda Sahtout is an award-winning academic, researcher, scientist, and leader. Dr. Sahtout completed her B.Sc. (Honours) in Biology from the University of Waterloo, M.Sc. in Molecular and Cellular Biology from the University of Guelph, and Ph.D. in Chemistry from the University of Saskatchewan. She is currently a Policy Analyst with Natural Resources Canada. Having tackled an academic journey with a visual impairment, Dr. Sahtout is passionate about advocating for inclusivity, diversity, equality, and accessibility in science, and committed to redefining the landscape and finding ways to help women and girls succeed. In her free time, she is the Managing director of the Muslim Achieving Excellence Scholarships Fund program, a national program dedicated to supporting excellence in youth.

ALI USMAN

Ali Usman is a dedicated scientist pursuing a Ph.D. in Experimental Physics in Regina, SK. He has conducted research at prestigious institutions like CERN, Brookhaven National Lab, and Jefferson Lab, focusing on the origins
of the universe and sub-atomic particles. He’s an avid advocate for science outreach and volunteers extensively. Facing the challenge of retinitis pigmentosa, Ali is determined to make science accessible to people with
disabilities. His future goal is to work in science policy, promoting inclusivity and accessibility in the scientific world. Outside the lab, Ali enjoys cooking, traveling, hiking, and indulging in music and movies.

Community resource fair

Join us at our vibrant Community Resource Fair! This is your chance to connect with experts, explore innovative resources, and access valuable information tailored to your vision care needs. From cutting-edge technology to rehabilitation and educational tools, we have something for everyone. Don’t miss out on this opportunity to learn from and engage with local resources.

The following organizations will have booths at the community resource fair:

• Apellis
• BALANCE for Blind Adults
• Beacon Therapeutics
• Braille Literacy Canada
• Canadian Blind Hockey Association
• Canadian Council of the Blind
• Centre For Equitable Library Access (CELA)
• CNIB Guide Dogs
• CNIB Smartlife
• eSight Eyewear
• Fighting Blindness Canada
• HT Consulting
• PAL Reading Services
• Special Needs Computer Solutions
• Trailblazers Tandem Cycling Club
• Vision Aids
• Vision Loss Rehabilitation Ontario

  

View Point Sponsors

Thank you to all our sponsors! View Point is proudly supported by:

• National Presenting Sponsor: Bayer
• National Partners: AbbVie, Apellis, Astellas, Beacon Therapeutics, Biogen, Johnson & Johnson, Novartis and Roche.