2025 Stargardt Summit

Newton Country Day School of the Sacred Heart 785 Centre Street, Newton, MA, United States

Our Time is Now—there has never been a more promising time for research for treatments for Stargardt, more breathtaking advances in assistive technology, more connection between our community and helpful resources, and more excitement about the first ever fictional film in the making about Stargardt, SEEING STARS, sure to be an awareness explosion. Join us…

Free

Stargardt’s Connected Young People’s Zoom Session

Online (Zoom)

A chance for young people with Stargardt's to get together, share ideas and have discussions with other young people in the community. This month we will be talking about how to advocate for yourself. Register in advance for this meeting https://us02web.zoom.us/meeting/register/X9o4obwUQDK7AVA_sgZ9KA After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt’s Connected Parent’s Zoom Session

Online (Zoom)

A chance for parents of children and young people with Stargardt's to get together and share ideas and discussion with other parents in the community. This month we will have a Q&A with Sian Muggridge, QTVI (qualified teacher of young people with vision impairment) all about education. Register in advance for this meeting https://us02web.zoom.us/meeting/register/qYW80-rZRdCaVDmSBrTU4A After…

Stargardt’s Connected Community Zoom Session (April)

Online (Zoom)

Emmy award winning actress Ellen Gould will be joining us to give an update on her upcoming film, Seeing Stars, inspired by stories of five women with Stargardt’s. Register in…

Stargardt’s Connected Community Zoom Session (May)

Online (Zoom)

Jonathon Vine, Senior Director of Clinical Operations at SpliceBio will provide an update on their Stargardt's clinical trials with an opportunity for questions and answers afterwards. Register in advance for this meeting https://us02web.zoom.us/meeting/register/N86MUBXtRtifMOTxUpucVw After registering, you will receive a confirmation email containing information about joining the meeting.

Children and Young People’s Zoom Session (June)

Online (Zoom)

Living with Stargardt's: Sharing tips and experiences and show and tell your favourite apps/tech. Register in advance for this meeting https://us02web.zoom.us/meeting/register/TAUnTBl0RJCZoOUSKOp0bw After registering, you will receive a confirmation email containing information about joining the meeting.

Parents’ Zoom Session (June)

Online (Zoom)

Informal chat to share experiences (joined by QTVI Sian Muggridge) . Register in advance for this meeting https://us02web.zoom.us/meeting/register/a_DVjGY8QkOP_QI2fANg1w After registering, you will receive a confirmation email containing information about joining the meeting.

Community Zoom Session (July)

Online (Zoom)

We are delighted to have Dr. Alekseev, a Principal Investigator for the Belite Bio DRAGON II study at Duke University Hospital (Duke Eye Center USA) joining this session to share…