The Carroll Center for the Blind to Host Summit on Stargardt Disease Research & Technology Advances

NEWTON, Mass. (Feb. 23, 2024) – The Carroll Center for the Blind, a pioneering nonprofit organization dedicated to empowering individuals with vision loss, will host The Stargardt’s Summit on February 29, a gathering of patients, medical professionals and assistive technology experts who will share the latest research and resources about the rare genetic eye disease.

The free virtual summit will be held in partnership with the Foundation Fighting Blindness, the world’s leading private funding source for retinal degenerative disease research, Prevent Blindness, a volunteer eye health and safety organization dedicated to fighting blindness and saving sight, and The Blind Life, a YouTube channel dedicated to the blind and visually impaired community.

“We encourage anyone affected by Stargardt disease or interested in supporting the Stargardt community to join this summit where we will hear impactful patient stories and the latest advances in treatment opportunities and technology tools from an engaging group of panelists,” said Greg Donnelly, President and CEO of the Carroll Center for the Blind.

The summit is sponsored by Alkeus Pharmaceuticals, a Cambridge-based biopharmaceutical company working to address the root cause of Stargardt disease, an incurable form of macular degeneration affecting about 30,000 people in the U.S. with progressive vision loss.

“We are honored to support the first U.S. summit to bring together people impacted by Stargardt disease for meaningful discussions about their experiences, the latest research and adaptive living technology resources,” Leonide Saad, Ph.D., Co-founder, President and CEO of Alkeus Pharmaceuticals.  “We commend The Carroll Center for the Blind for hosting this important event, raising awareness and connecting the Stargardt community to tools and information.”   

The event will be emceed by Martha Steele, a blind individual who serves on the boards of the Carroll Center for the Blind and the Foundation Fighting Blindness.  The keynote speaker is Bradford Manning, who co-founded Two Blind Brothers, a charitable clothing company that donates 100% of its profits to research for a cure for blindness.  Manning and his brother Bryan were diagnosed with Stargardt disease at a young age.

The patient panel will have three individuals sharing their personal experiences living with Stargardt disease, including Charlie Collins, founder of Vision Dynamics, an international transformational speaker, certified professional success coach and bestselling author; Jack Duffy-Protentis, founder and CEO of eSki Watercraft, a Worcester Polytechnic Institute graduate who invented an electric personal watercraft product despite challenges with limited peripheral vision from Stargardt disease; and Chloé Duplessis, founder of Duplessis Art, who is a legally blind artist, curator, historian and creator using her work to erode the social constructs that oppress people of color and those navigating disability.  The panel will be moderated by Kira Baldonado, vice president of public health and policy at Prevent Blindness.

Ben Shaberman, vice president of science communications at the Foundation Fighting Blindness, will moderate a medical/research panel discussing the latest Stargardt disease research with Dr. Jason Comander, director of the Inherited Retinal Disorders Service at Mass. Eye and Ear; Abbie Jensen, Ph.D., an associate professor in the biology department at UMass Amherst; and Dr. Peter Zhao, a vitreoretinal surgeon and assistant professor of ophthalmology at Tufts University School of Medicine.

The summit will then highlight the latest accessibility and adaptive strategies, with Tina Laffer, the Carroll Center’s director of outreach and community engagement, guiding a conversation with Bob McGillivray, a rehabilitation engineer and director of low vision at the Carroll Center, and Sam Seavey, founder of “The Blind Life” YouTube channel, who was diagnosed with Stargardt disease at 11 and has dedicated 30 years to researching and understanding assistive devices.  Seavey has collaborated with top tech companies such as Apple and Google.

The Stargardt’s Summit will be held virtually (via Zoom) on February 29, 2024, from 1 to 5 p.m. ET.  For more information or to register, please click here.

About the Carroll Center for the Blind

Established in 1936, the Carroll Center for the Blind empowers those who are blind and visually impaired to achieve independence and to lead a fulfilling life.  The nonprofit organization provides services for individuals of all ages including vision rehabilitation services, vocational and transition programs, assistive technology training, educational support, low vision services, adjustment counseling, and essential skills for seniors.  For more information, visit www.carroll.org.

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Contact:

Greg Turner, Ball Consulting Group, LLC

Phone: 617-243-9950; Email: greg@ballcg.com