Stargardt's Connected

Stargardt's Connected Community Zoom Session (October)
2025-10-04 14:00 - 15:30 (Europe/London) | Online (Zoom)
Vicky, Rob and Marina will discuss travel tips for people with VI.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/6CWtuK47STOWmkXTptrNGQ
After registering, you will receive a confirmation email containing information about joining the meeting.

White Water Adventure Day with Stargardt’s Connected
2025-09-13 | Lee Valley White Water Centre, Station Road, Waltham Cross, EN9 1AB, United Kingdom
Join VICTA and Stargardt’s Connected at Lee Valley White Water Centre in September for an activity day making waves.
Taking advantage of Lee Valley’s Olympic facilities, we will begin the day with a Water Wipeout – a fun-sized inflatable obstacle course situated on the centre’s lake. Work your way over the obstacles, while trying to stay on the course before making a splash with the slide at the end. After working up an appetite, we’ll break for lunch, and you’ll have a chance to catch your breath before tackling Lee Valley’s White-Water Legacy Loop; a 160m Canoe Slalom course purpose built for the 2012 Olympics! As part of this session, you will learn basic rafting skills and how to raft safely before hitting the rapids – paddles up!
Guided by Lee Valley instructors, this is a perfect opportunity for those who haven’t tried white water rafting before, or for those who would like to perfect their skills in riding the waves. It’s also a great chance to meet like minded individuals and participate in activities in a safe and supportive environment.
Due to the nature of this activity, we ask that participants have an appropriate level of water confidence to take part. Note: we welcome applications from families and priority for places will be given to VI children and their siblings – there may be opportunities for adults to join in however this cannot be guaranteed. Parents/guardians are required to stay on site for the duration of this activity. If you have any questions, please do not hesitate to get in touch with the Activities team on activities@victa.org.uk.
Who: 8 to 17 year olds plus immediate family
Location: Lee Valley White Water Centre, Station Road, Waltham Cross, EN9 1AB
Cost: £5 per participating child (8 and over)
Closing date: Friday 15 August
Further details and to register: https://www.victa.org.uk/victa-calendar/stargardts-white-water/
Information about the White Water Centre at Lee Valley can be found here: https://www.better.org.uk/leisure-centre/lee-valley/white-water-centre

Picnic in the Park (2025)
2025-08-10 12:00 - 16:00 (Europe/London) | Hyde Park, Parade Ground, London, W2 2UH, United Kingdom
Come join us for our annual Summer Picnic in the Park. Bring your own picnic and have the opportunity to informally network, and meet others with Stargardt’s and their families.
Please let us know you will be attending by emailing us on events@stargardtsconnected.org.uk

Community Zoom Session (July)
2025-07-19 17:00 - 18:30 (Europe/London) | 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 recent research updates on Stargardt’s disease and providing an update on the DRAGON II Study clinical trials. In the second part, we will have our usual breakout sessions where you’ll have the opportunity to speak to others in smaller groups and share your experiences.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/_Tcxt2ydQ3uqDrNSqHT9Kg
After registering, you will receive a confirmation email containing information about joining the meeting.

Parents' Zoom Session (June)
2025-06-23 19:00 - 20:00 (Europe/London) | 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.

Children and Young People's Zoom Session (June)
2025-06-23 17:30 - 18:30 (Europe/London) | 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.

Stargardt's Connected Community Zoom Session (May)
2025-05-31 12:00 - 13:30 (Europe/London) | 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.

Stargardt's Connected Community Zoom Session (April)
2025-04-12 14:00 - 15:30 (Europe/London) | 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 advance for this meeting
https://us02web.zoom.us/meeting/register/WL0HXSPoRSqXTwxet4VOPQ
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Parent's Zoom Session
2025-03-31 19:00 - 20:00 (Europe/London) | 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 registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Young People's Zoom Session
2025-03-31 17:30 - 18:30 (Europe/London) | 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.

2025 Stargardt Summit
2025-02-22 10:00 - 16:00 (America/New_York) | Newton Country Day School of the Sacred Heart, 785 Centre Street, Newton, MA, MA 02458, 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 at the second annual Stargardt Summit to celebrate these advances and experience an incredible lineup of speakers and panelists, each bringing unique personalities, valuable lived experiences, and a wealth of knowledge to share. Below, you will find detailed panel descriptions and background information on our expert speakers.
Event Details
Date: Saturday, February 22, 2025
Time: 10:00 am – 4:00 pm EST (Virtual attendance ends at 1:00 pm). View the event time in your time zone here.
Location: Virtual OR In-Person at Newton Country Day School of the Sacred Heart, 785 Centre Street, Newton, MA 02458
Cost: Free

Stargardt's Connected Conference 2024
2024-11-23 10:00 - 16:30 (Europe/London) | etc. venues, 8 Fenchurch Place, London, EC3M 4PB, United Kingdom
