The Stargardt’s Summit

The Stargardt’s Summit was held on February 29, 2024 with the goal to share the latest resources and information with the Stargardt’s community. Attendees learned about the newest research, explored adaptive living resources, heard impactful patient stories, and connected with others going through a similar journey.

Summit Recordings

We are pleased to announce that the video recordings for the entire event are ready for viewing! Below, you will find a link to the Stargardt’s Summit YouTube playlist with five (5) recordings:

  • Part 1: Introduction & Keynote by Bradford Manning
  • Part 2: The Patient Panel with Kira Baldonado, Jack Duffy Protentis, Charlie Collins, and Chloe Duplessis, followed by a short preview of “Seeing Stars”, a new film about Stargardt’s
  • Part 3: The Research Panel with Ben Shaberman, Drs. Jason Comander MD PhD, Abigail Jensen PhD, and Peter Zhao MD
  • Part 4: The Accessibility & Adaptive Living Panel with Tina Laffer, Bob McGillivray, and Sam Seavey
  • Part 5: An audio recording of the closing virtual Q&A session

Event Partners:

Carroll Center for the Blind Logo
Foundation Fighting Blindness Logo
Prevent Blindness Logo
The Blind Life Logo

Sponsored By:

Alkeus Pharmaceuticals Logo

Program Overview

1:00 – 1:05 PM | Welcome from Greg Donnelly, CEO and President of The Carroll Center for the Blind

1:05 – 1:15 PM | Martha Steele, member of the Board of Directors for The Carroll Center for the Blind and Foundation Fighting Blindness and MC of the event, will share a few words about the day’s program.

1:15 – 1:30 PM | Keynote Speaker: Bradford Manning, Two Blind Brothers

1:30 PM – 2:15 PM | Patient Panel

Kira Baldonado, Vice President of Public Health and Policy at Prevent Blindness, will guide a conversation with panelists Chloé Duplessis, Charlie Collins, and Jack Duffy-Protentis who will share their personal experiences with Stargardt’s.

2:15 – 2:25 PM | Break

2:25 – 3:10 PM | Medical/Research Panel

Ben Shaberman, Vice President of Science Communications at Foundation Fighting Blindness, will guide a conversation with panelists Dr. Jason Comander M.D., Dr. Peter Zhao M.D, and Dr. Abigail Jensen Ph.D on the latest Stargardt’s research and the biological basis of the disease.

3:10 – 3:20 PM | Break

3:20 – 4:05 PM | Accessibility & Adaptive Strategies Panel

Tina Laffer, Director of Outreach and Community Engagement at The Carroll Center for the Blind, will guide a conversation with panelists Sam Seavey and Bob McGillivray to explore the latest tools and strategies to navigate the world with Stargardt’s.

4:05 – 4:15 PM | Presentation & Program Wrap-up

4:15 – 5:00 PM | Attendees will transition to a Q&A session led by representatives of all partner organizations for further resource exploration.

Contact Information

If you have any questions about the Stargardt’s Summit, please contact Michelle Georges via email or call (617) 969-6200 x 237.