Stargardt's Summit Speakers and Panelists
Event Details
Date: Thursday, February 29, 2024
Time: 1:00 – 5:00 PM ET
Location: Zoom
Cost: Free
This year’s event is hosted by The Carroll Center for the Blind, in partnership with Foundation Fighting Blindness, Prevent Blindness, and The Blind Life.
Sponsored By:
Keynote Speaker
Bradford Manning
Bradford and Bryan Manning are two blind brothers on a mission to cure blindness. At a young age, they were diagnosed with Stargardt’s disease, which causes blindness over time. To fight back, they left their former careers to start Two Blind Brothers, a small charitable clothing company that donates 100% of its profits to drive life-changing research for a cure for blindness. Their condition inspired a special attention to details, a passion that carries over into the construction of their clothing line. Two Blind Brothers focuses on quality, comfort, and “sense of touch.”
Patient Panel
Moderator: Kira Baldonado, Vice President of Public Health and Policy, Prevent Blindness
Panelists:
Charlie Collins, CPSC
Charlie Collins is founder of Vision Dynamics and Charlie Collins International. He is also co-Founder of Thriving Blind Academy. Charlie is a well-respected International Transformational Speaker, Certified Professional Success Coach, and a bestselling author who helps inspire and empower people to live a life with a clear vision of success. Legally blind since the age of 13 from juvenile macular degeneration, Charlie struggled with accepting his diagnosis and suffered tragic pitfalls of low self-esteem. He chronicles this journey in his memoir, “Tripping Into the Light.” He turned his challenging life’s circumstances around and now offers hope by teaching how to remove the blocks in our lives, develop a vision of success with clarity, and fulfill our life’s true purpose. Charlie’s extraordinary and inspirational story has been shared by many local and national print and tv media outlets including Forbes, Fox, NBC and ABC. His story was also featured in Jack Canfield’s renowned New York Times Best Selling, “Success Principles (10th Anniversary Edition).”
Jack Duffy-Protentis
Jack Duffy-Protentis, Founder and CEO of eSki Watercraft, grew up in New England close to the water where he fostered a love of recreational water sports. From a young age, he has always had a fascination with engineering. Jack has combined these passions to create eSki and develop a distinct electric personal watercraft product. Jack was diagnosed with Stargardt disease in 2006. Despite the challenges with limited peripheral vision, He has never let it get in the way of achieving his goals. In 2020, Jack received his Bachelor of Science in Mechanical Engineering from Worcester Polytechnic Institute. Jack continues to chart his own course and his next goal is to find investment to bring eSki to market.
Chloé Duplessis
Chloé Duplessis creates images that elevate the unknown, illuminate the forgotten, and mindfully address the present. In doing so, she seeks to center the importance of shared history, and erode the social constructs that oppress people of color and those navigating disability. She is a legally blind artist (with Stargardt’s), curator and historian committed to creating work that centers equity, accessibility and healing. With over twenty years of experience in intercultural engagement, arts administration and advocacy, she has traveled to 9 countries and 24 states in support of her work. She earned a Bachelor’s degree in Cultural Studies from The University of New Orleans, and studied art and history at Charles University in Prague, Czech Republic. Duplessis is the creator of Denver’s first accessible “I VOTED” sticker and co – creator of the noted Holding Hope mural located in RiNo Art District. She is also the 2023 recipient of Denver Mayor’s Award for Excellence in Arts and Culture in Equity, Diversity and Inclusion. Chloé has been featured in The Denver Post, 303 Magazine, The Independent and on Colorado Public Radio, CBS 4 News Denver, and NBC 9News Denver. She is the founder of Duplessis Art, an arts studio and consultancy based in Colorado.
Medical/Research Panel
Moderator: Ben Shaberman, Vice President of Science Communications, Foundation Fighting Blindness
Panelists
Jason Comander, M.D., Ph.D.
Dr. Jason Comander is clinician-scientist at Mass. Eye and Ear, specializing in the diagnosis and treatment of inherited retinal diseases. He is a graduate of Harvard Medical School M.D./Ph.D. program, and completed a Harvard Ophthalmology residency, a vitreoretinal surgery fellowship, and inherited retinal disease training at Mass Eye and Ear. He is currently the Director of the Inherited Retinal Disorders Service at Mass Eye and Ear. As a clinician-scientist, Dr. Comander’s research primarily focuses on the genetics and treatment of inherited retinal diseases. His laboratory’s research is supported by the National Eye Institute and by foundations including Foundation Fighting Blindness. Dr. Comander is an investigator and surgeon for a number of ongoing clinical trials for patients with inherited retinal disorders. In 2018, Dr. Comander and his team were the first to perform an FDA-approved gene therapy procedure for any inherited disease. In 2020, he and the Mass Eye and Ear team performed one of the first gene editing surgeries to deliver CRISPR/Cas9 gene editing reagents in vivo.
Abbie Jensen, Ph.D.
Dr. Jensen grew up in Omaha, Nebraska. She received her undergraduate degree from the University of California, San Diego and was a research assistant at the neighboring Molecular Neurobiology Lab in the Salk Institute. She received her PhD in Neuroscience from University of Wisconsin-Madison (frigid winters, vibrant music scene). Dr. Jensen trained with Dr. Martin Raff at University College London (less fog than expected), beginning her research in retinal development. She then moved to the University of Oregon-Eugene to train with Monte Westerfield, continuing research on retinal development using zebrafish as a model system (her daughter was born- a Duck native). Dr. Jensen began her faculty position in the Biology Department at UMass- Amherst in 2003. Her research on retinal development in zebrafish continued for many years. More recently, research has sought (1) to discover mechanisms that maintain the sensory compartment of photoreceptors, the outer segment, for a lifetime and (2) to discover the cellular mechanisms that underlie photoreceptor degeneration diseases, particularly Stargardt disease (the ABCA4 gene). Dr. Jensen has published numerous scientific articles, and her research has been funded by the National Eye Institute (NIH), National Science Foundation, and Foundation Fighting Blindness. Dr Jensen loves Massachusetts: mild summers and winters, great live music scene, abundant natural beauty, and vast hiking opportunities.
Peter Zhao, M.D.
Peter Zhao, MD is a vitreoretinal surgeon and Assistant Professor of Ophthalmology at Tufts University School of Medicine. He obtained his undergraduate degree from Dartmouth College and medical degree from Yale University School of Medicine. He completed ophthalmology residency at the W.K. Kellogg Eye Center of the University of Michigan. After residency, he remained at the Kellogg Eye Center to complete a fellowship in retinal dystrophies funded by Foundation Fighting Blindness, followed by a second fellowship in vitreoretinal surgery. His primary research interest is developing new imaging and functional outcome measures for degenerative retinal diseases, including retinal dystrophies and age-related macular degeneration.
Accessibility and Adaptive Strategies Panel
Moderator: Tina Laffer, Director of Outreach and Community Engagement, Carroll Center for the Blind
Panelists
Bob McGillivray, CLVT
Bob McGillivray, Certified Low Vision Therapist and Director of Low Vision at the Carroll Center for the Blind, is a rehabilitation engineer, who has worked with persons who are visually impaired for over 50 years. Bob also serves as an engineer consultant for the Massachusetts Commission for the Blind. Bob helps persons who are working, school age children and elders determine their low vision potential. He has presented at seminars and courses on many low vision topics. In 1991 he received the Northeast Chapter of AER Award for Excellence in Rehabilitation.
Sam Seavey
Sam Seavey, founder of The Blind Life YouTube channel, is a renowned expert in assistive technology. With over 60,000 subscribers and 800+ videos, Sam provides valuable tips, reviews of assistive devices, and interviews with visually impaired community members. Diagnosed with Stargardt’s at 11, Sam has dedicated 30 years to researching and understanding assistive devices. He’s been featured in prestigious publications and collaborates with tech giants like Google and Apple. Sam currently manages an assistive technology program, offering training and aiming to help everyone live their best blind life.
MC for the Event
Martha Steele
Martha has Usher syndrome and is now totally blind and has two cochlear implants. She is a member of the Board of Directors for the Foundation Fighting Blindness and the Carroll Center for the Blind. In 2015, she retired from her position as Deputy Director for the Bureau of Environmental Health at the Massachusetts Department of Public Health. She is a passionate birder and has written a column, “Musings From the Blind Birder,” since 2014 for a regional birding publication, Bird Observer.
