Stargardt’s Summit hosted by The Carroll Center for the Blind was a huge success!

Last Thursday, The Carroll Center for the Blind was honored to host the first Stargardt’s Summit in the United States, in partnership with Foundation Fighting Blindness, Prevent Blindness, and The Blind Life. The summit was generously sponsored by Alkeus Pharmaceuticals, a Cambridge-based biopharmaceutical company working to address the root cause of Stargardt disease.

The Stargardt’s Summit was attended in person and virtually by more than 1,500 people, uniting the Stargardt’s community across the world. Attendees learned about the newest research, explored adaptive living resources, heard impactful patient stories, and connected with others going through a similar journey.

The summit had three panels:

  • Patient Panel – Kira Baldonado, Vice President of Public Health and Policy at Prevent Blindness, guided a conversation with panelists Chloé Duplessis, Charlie Collins, and Jack Duffy-Protentis who shared their personal experiences with Stargardt’s.
  • Research Panel – Ben Shaberman, Vice President of Science Communications at Foundation Fighting Blindness, guided 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.
  • Accessibility and Adaptive Strategies Panel – Tina Laffer, Director of Outreach and Community Engagement at The Carroll Center for the Blind, guided a conversation with panelists Sam Seavey and Bob McGillivray to explore the latest tools and strategies to navigate the world with Stargardt’s.


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

Thank you to our Sponsor!

Alkeus Pharmaceuticals Logo