Stargardt's Connected

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

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.

Stargardt's Connected Information Day
2025-11-15 14:00 - 17:30 | Online (Zoom)
Register Now!
https://us02web.zoom.us/meeting/register/MeABUY-aTHW90Qg8-0ydMg
We have an exciting programme of presentations covering a range of topics. Here is the agenda for the day:

14:00-14:10: Introductions and order of the day
14:10-14:40: AAVantgarde Bio presentation with Q and A
14:40-15:10: Alkeus Pharmaceuticals presentation with Q and A
15:10-15:15: Break
15:15-15:45: Tech Session with Sam Seavey from The Blind Life with Q and A
15:45-16:15: Living well with Stargardt’s panel session with community members speaking about their experiences including Q and A:
– Emily – Navigating the education system
– Alice – Bringing up a young family when you have Stargardt’s
– Tom and Toby – Finding employment and being in the workplace
16:15-16:20: Plenary
16:20-16:30: Break
16:30-17:30: Breakout Sessions – informal small group sessions to socialise and speak to other members. There will be a separate Parent / Carer breakout session for those who want to join, with Sian QTVI (qualified teacher of visually impaired) there to answer any education-related questions.

Thank you to our sponsors: Alkeus Pharmaceuticals and AAVantgarde Bio

Stargardt's Connected Young People's Zoom Session (December)
2025-12-01 17:30 - 18:30 | Online (Zoom)
The festive season is upon us and to celebrate we will be holding a Christmas-themed hour for our next children and young people’s Zoom session. This will include some festive games and cookie decorating. Don’t forget to wear your festive jumpers.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/jAiu-ZhzQZ-rN68KqyhUWw
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Parent's Zoom Session (December)
2025-12-01 19:00 - 20:00 | Online (Zoom)
It’s our last parent’s session of the year and we will have Sian our QTVI there to answer any education-related queries. We know how hectic this time of year can be so we are delighted to have Zakia, a wellbeing practitioner, to bring some calm to the busyness and guide you through some breathing and meditation exercises.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/jAiu-ZhzQZ-rN68KqyhUWw
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Community Zoom Session (December)
2025-12-06 12:00 - 13:30 | Online (Zoom)
Following on from AAVantgarde Bio’s presentation at our Information Day, we are delighted to welcome back Dr Claudio Spero to our last Community Zoom of the year. He will be speaking in more detail about the Stargardt’s studies CELESTE and STELLA and there will be opportunities for a Q&A after.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/TKgRTYsiTASvzV9KGcp7ig
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Young People's Zoom Session (January 2026)
2026-01-19 17:30 - 18:30 | Online (Zoom)
Exam tips and revision techniques.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/tzl0lnxhTfmNPwDEsWJCOg
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Parent's Zoom Session (January 2026)
2026-01-19 19:00 - 20:00 | Online (Zoom)
Exam 101 (Our QTVI will be on hand to answer questions about exams and revision resources)
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/x4-vQYwNRcW1DNX2Ww8cug
After registering, you will receive a confirmation email containing information about joining the meeting.

Stargardt's Connected Community Zoom Session (January 2026)
2026-01-31 12:00 - 13:30 | Online (Zoom)
A presentation from Stargardt’s Connected trustee Louise Kearney on clinical trials and jargon busting.
Register in advance for this meeting
https://us02web.zoom.us/meeting/register/Dc_MeGk5Q_m2XlT-ghiVzg
After registering, you will receive a confirmation email containing information about joining the meeting.
