Podcast Summary: Foundation Fighting Blindness – Where Research Meets with Support
Hadley Presents: A Conversation with the Experts
Episode: Foundation Fighting Blindness: Where Research Meets with Support
Release Date: February 27, 2025
Host: Ricky Enger
Guest: Ben Shaberman, Vice President of Science Communications, Foundation Fighting Blindness
Introduction
In this enlightening episode of Hadley Presents: A Conversation with the Experts, host Ricky Enger welcomes Ben Shaberman, Vice President of Science Communications at the Foundation Fighting Blindness (FFB). The discussion centers around FFB’s pivotal role in supporting individuals and families affected by vision loss, bridging the gap between cutting-edge research and community support.
About Ben Shaberman and the Foundation Fighting Blindness
Ben Shaberman shares his personal journey with FFB, highlighting his transition from a novice in retinal biology to a seasoned science communicator over his 20-year tenure with the organization.
“At the time, I knew little about the eye, the retina, or even biology for that matter... It was almost like a constant college course in retinal research and retinal diseases.”
— Ben Shaberman [01:00]
The Foundation Fighting Blindness, established in 1971, has dedicated over five decades to funding research for inherited retinal diseases, including retinitis pigmentosa, Stargardt disease, Usher syndrome, and Leber congenital amaurosis (LCA). Under Ben’s communication leadership, FFB has successfully raised nearly a billion dollars to further its mission.
Supporting Patients and Families
A significant portion of the conversation delves into how FFB assists individuals newly diagnosed with vision loss, addressing the overwhelming nature of receiving such news.
“Our website and our team, we understand the conditions, we can help people understand what's going on.”
— Ben Shaberman [03:44]
Services Provided:
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No-Cost Genetic Testing: Identifying specific gene mutations to clarify diagnoses and assess familial risks.
“If you can identify that mutated gene, it really helps people understand the diagnosis, clarify the diagnosis.”
— Ben Shaberman [04:02] -
My Retina Tracker Registry: Enrolling patients to connect them with relevant clinical trials while safeguarding personal information.
“We protect people's privacy and identity.”
— Ben Shaberman [05:30] -
Local Chapters: Over 45 chapters nationwide offer community support, educational resources, and networking opportunities for individuals on similar journeys.
“Finding those people who are on similar journeys... can be very powerful.”
— Ricky Enger [06:47]
Education and Communication of Research
Ben emphasizes FFB’s commitment to making complex scientific research accessible to the general public through various channels.
“We try to accommodate everybody. The science can get pretty complicated, but we do try to keep it simple for a general audience in many cases.”
— Ben Shaberman [09:44]
Available Resources:
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Website (fightingblindness.org): Comprehensive information on emerging therapies, research updates, and educational videos.
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Webinars and Local Events: Regularly scheduled webinars, including topics like age-related macular degeneration, and local educational meetings.
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Clinical Trials Pipeline Chart: An up-to-date listing of ongoing clinical trials available under the research tab on their website.
Participating in Clinical Research
The discussion highlights the pathways for individuals to get involved in clinical trials, emphasizing the importance of the My Retina Tracker registry.
“Being in the My Retina Tracker registry is definitely a great way to do that.”
— Ben Shaberman [12:57]
Steps to Participate:
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Register on My Retina Tracker: Accessible at myretinatracker.org, enabling participation without necessarily having a genetic diagnosis.
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Complete Additional Surveys: Enhances the registry’s effectiveness in matching patients with relevant trials.
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Sign Up for News Alerts: Stay informed about the latest research and clinical trial opportunities via the FFB website.
Community Engagement through Local Chapters
Ben outlines the dual role of local chapters in fostering community and driving fundraising efforts to support FFB’s mission.
“It’s not just about research. Often we feature low vision speakers, people who know about resources and accommodations...”
— Ben Shaberman [15:36]
Chapter Activities:
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Educational Events: Workshops and seminars featuring experts on low vision resources and accommodations.
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Fundraising Initiatives: Organizing walks, golf tournaments, dinners, and creative DIY events to raise funds for research.
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Community Building: Offering a platform for individuals to connect, share experiences, and support one another.
Conclusion and Key Takeaways
As the conversation wraps up, Ben underscores FFB’s dedication to both community support and advancing research, ensuring that individuals receive personalized assistance tailored to their unique journeys with vision loss.
“Helping people on an individual basis on their individual journey or their family journey is really important to me.”
— Ben Shaberman [17:45]
How to Connect with FFB:
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Website: fightingblindness.org
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Email: info@fightingblindness.org
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Phone: 1-800-683-5555
Ricky Enger expresses sincere gratitude to Ben for sharing insights into FFB’s impactful work, highlighting the organization’s integral role in enhancing the lives of those affected by vision loss through research, support, and community engagement.
“We're all about the research and that's really important to a lot of people... we really appreciate what Hadley does to help people.”
— Ben Shaberman [20:13]
Final Thoughts
This episode illuminates the comprehensive support system provided by the Foundation Fighting Blindness, from facilitating access to groundbreaking research to fostering a robust community for individuals navigating vision loss. Listeners are encouraged to explore FFB’s resources, join local chapters, and consider participation in clinical research to contribute to the ongoing fight against blindness.
For more information and to listen to the full episode, visit HadleyHelps.org.