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X-WR-CALNAME:Stargardt's Connected
X-ORIGINAL-URL:https://stargardtsconnected.org.uk
X-WR-CALDESC:Events for Stargardt's Connected
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250913
DTEND;VALUE=DATE:20250914
DTSTAMP:20260501T040607
CREATED:20250709T121338Z
LAST-MODIFIED:20250815T111000Z
UID:10000011-1757721600-1757807999@stargardtsconnected.org.uk
SUMMARY:White Water Adventure Day with Stargardt’s Connected
DESCRIPTION:Join VICTA and Stargardt’s Connected at Lee Valley White Water Centre in September for an activity day making waves. \nTaking 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! \nGuided 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. \nDue 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. \nWho: 8 to 17 year olds plus immediate family \nLocation: Lee Valley White Water Centre\, Station Road\, Waltham Cross\, EN9 1AB \nCost: £5 per participating child (8 and over) \nClosing date: Friday 15 August \nFurther details and to register: https://www.victa.org.uk/victa-calendar/stargardts-white-water/ \nInformation about the White Water Centre at Lee Valley can be found here: https://www.better.org.uk/leisure-centre/lee-valley/white-water-centre
URL:https://stargardtsconnected.org.uk/event/white-water-adventure-day-with-stargardts-connected/
LOCATION:Lee Valley White Water Centre\, Station Road\, Waltham Cross\, EN9 1AB\, United Kingdom
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250810T120000
DTEND;TZID=Europe/London:20250810T160000
DTSTAMP:20260501T040607
CREATED:20250619T130039Z
LAST-MODIFIED:20250709T121811Z
UID:10000010-1754827200-1754841600@stargardtsconnected.org.uk
SUMMARY:Picnic in the Park (2025)
DESCRIPTION: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. \nPlease let us know you will be attending by emailing us on events@stargardtsconnected.org.uk
URL:https://stargardtsconnected.org.uk/event/picnic-in-the-park-2025/
LOCATION:Hyde Park\, Parade Ground\, London\, W2 2UH\, United Kingdom
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250719T170000
DTEND;TZID=Europe/London:20250719T183000
DTSTAMP:20260501T040607
CREATED:20250619T125856Z
LAST-MODIFIED:20250619T125856Z
UID:10000009-1752944400-1752949800@stargardtsconnected.org.uk
SUMMARY:Community Zoom Session (July)
DESCRIPTION: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. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/_Tcxt2ydQ3uqDrNSqHT9Kg \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/community-zoom-session-july/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250623T190000
DTEND;TZID=Europe/London:20250623T200000
DTSTAMP:20260501T040607
CREATED:20250619T125654Z
LAST-MODIFIED:20250619T125654Z
UID:10000008-1750705200-1750708800@stargardtsconnected.org.uk
SUMMARY:Parents' Zoom Session (June)
DESCRIPTION:Informal chat to share experiences (joined by QTVI Sian Muggridge) . \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/a_DVjGY8QkOP_QI2fANg1w \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/parents-zoom-session-june/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250623T173000
DTEND;TZID=Europe/London:20250623T183000
DTSTAMP:20260501T040607
CREATED:20250619T121501Z
LAST-MODIFIED:20250619T121501Z
UID:10000007-1750699800-1750703400@stargardtsconnected.org.uk
SUMMARY:Children and Young People's Zoom Session (June)
DESCRIPTION:Living with Stargardt’s: Sharing tips and experiences and show and tell your favourite apps/tech. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/TAUnTBl0RJCZoOUSKOp0bw \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/children-and-young-peoples-zoom-session-june/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250531T120000
DTEND;TZID=Europe/London:20250531T133000
DTSTAMP:20260501T040607
CREATED:20250521T083209Z
LAST-MODIFIED:20250521T083209Z
UID:10000006-1748692800-1748698200@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Community Zoom Session (May)
DESCRIPTION: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. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/N86MUBXtRtifMOTxUpucVw \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-community-zoom-session-may/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250412T140000
DTEND;TZID=Europe/London:20250412T153000
DTSTAMP:20260501T040607
CREATED:20250406T152545Z
LAST-MODIFIED:20250406T152545Z
UID:10000005-1744466400-1744471800@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Community Zoom Session (April)
DESCRIPTION: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. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/WL0HXSPoRSqXTwxet4VOPQ \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-community-zoom-session-april/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250331T190000
DTEND;TZID=Europe/London:20250331T200000
DTSTAMP:20260501T040607
CREATED:20250317T100805Z
LAST-MODIFIED:20250317T100805Z
UID:10000004-1743447600-1743451200@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Parent's Zoom Session
DESCRIPTION: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. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/qYW80-rZRdCaVDmSBrTU4A \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-parents-zoom-session/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20250331T173000
DTEND;TZID=Europe/London:20250331T183000
DTSTAMP:20260501T040607
CREATED:20250317T100416Z
LAST-MODIFIED:20250317T100559Z
UID:10000003-1743442200-1743445800@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Young People's Zoom Session
DESCRIPTION: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. \nRegister in advance for this meeting\nhttps://us02web.zoom.us/meeting/register/X9o4obwUQDK7AVA_sgZ9KA \nAfter registering\, you will receive a confirmation email containing information about joining the meeting.
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-young-peoples-zoom-session/
LOCATION:Online (Zoom)
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250222T100000
DTEND;TZID=America/New_York:20250222T160000
DTSTAMP:20260501T040607
CREATED:20250129T130933Z
LAST-MODIFIED:20250129T131546Z
UID:10000002-1740218400-1740240000@stargardtsconnected.org.uk
SUMMARY:2025 Stargardt Summit
DESCRIPTION: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. \nEvent Details\nDate: Saturday\, February 22\, 2025 \nTime: 10:00 am – 4:00 pm EST (Virtual attendance ends at 1:00 pm). View the event time in your time zone here. \nLocation: Virtual OR In-Person at Newton Country Day School of the Sacred Heart\, 785 Centre Street\, Newton\, MA 02458 \nCost: Free
URL:https://stargardtsconnected.org.uk/event/2025-stargardt-summit/
LOCATION:Newton Country Day School of the Sacred Heart\, 785 Centre Street\, Newton\, MA\, MA 02458\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20241123T100000
DTEND;TZID=Europe/London:20241123T163000
DTSTAMP:20260501T040607
CREATED:20240925T164440Z
LAST-MODIFIED:20241126T103648Z
UID:10000001-1732356000-1732379400@stargardtsconnected.org.uk
SUMMARY:Stargardt's Connected Conference 2024
DESCRIPTION:
URL:https://stargardtsconnected.org.uk/event/stargardts-connected-conference-2024/
LOCATION:etc. venues\, 8 Fenchurch Place\, London\, EC3M 4PB\, United Kingdom
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