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News from our Faceboook page

Stargardt's Connected

4 hours ago

Join us on Monday 3rd November 5:30pm (GMT) for our next Children and Young People’s Zoom session.

Get ready for some autumn-themed fun! We’ll play games, enjoy a cosy story activity, and have time to share our experiences together.

Here is the link to register: us02web.zoom.us/meeting/register/30gU3-VNQIKqlqgxbfG0Uw

PD: a yellow poster announcing the next Children and Young People’s Zoom session at 5:30pm (GMT) Monday 3rd November.

#Stargardts #StargardtsConnected #ZoomSessions #AutumnFun ... See MoreSee Less

Join us on Monday 3rd November 5:30pm (GMT) for our next Children and Young People’s Zoom session.

Get ready for some autumn-themed fun! We’ll play games, enjoy a cosy story activity, and have time to share our experiences together.

Here is the link to register: https://us02web.zoom.us/meeting/register/30gU3-VNQIKqlqgxbfG0Uw

PD: a yellow poster announcing the next Children and Young People’s Zoom session at 5:30pm (GMT) Monday 3rd November.

#Stargardts #StargardtsConnected #ZoomSessions #AutumnFun

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Stargardt's Connected

5 days ago

On Saturday 15th November from 14:00-17:30 GMT we will be holding a Virtual Information Day which has been very kindly sponsored by AAVantgarde Bio and Alkeus Pharmaceuticals.

We will have speakers from:

•AAVantgarde Bio
•Alkeus Pharmaceuticals
•YouTuber Sam Seavey @theblindlifesam from The Blind Life talking about the latest assistive technology.
•A “Living with Stargardt’s” panel session with community members speaking on topics of education, employment and being a parent with Stargardt’s.
•Breakout sessions where
there will be the chance to chat informally in small groups and sharing tips and in small groups, with a dedicated Parent/Carer session with Sian QTVI available for those education related questions

Don’t miss this informative session and make sure you register for the event by clicking the button below.

We look forward to you joining us!

Here is the link to register: us02web.zoom.us/meeting/register/MeABUY-aTHW90Qg8-0ydMg

PD: A poster with black text announcing our virtual Information Day on the 15th November 2-5:30pm GMT. Logos of the event sponsors are displayed at the bottom of the poster.

#StargardtsConnected #InformationDay #ZoomSession #CommunityZoomSessions #Stargardts #StargardtsDisease #StargardtsSupport #StargardtsCommunity ... See MoreSee Less

On Saturday 15th November from 14:00-17:30 GMT we will be holding a Virtual Information Day which has been very kindly sponsored by AAVantgarde Bio and Alkeus Pharmaceuticals.

We will have speakers from:

•AAVantgarde Bio
•Alkeus Pharmaceuticals
•YouTuber Sam Seavey @theblindlifesam from The Blind Life talking about the latest assistive technology.
•A “Living with Stargardt’s” panel session with community members speaking on topics of education, employment and being a parent with Stargardt’s.
•Breakout sessions where
there will be the chance to chat informally in small groups and sharing tips and in small groups, with a dedicated Parent/Carer session with Sian QTVI available for those education related questions

Don’t miss this informative session and make sure you register for the event by clicking the button below.

We look forward to you joining us!

Here is the link to register: https://us02web.zoom.us/meeting/register/MeABUY-aTHW90Qg8-0ydMg

PD: A poster with black text announcing our virtual Information Day on the 15th November 2-5:30pm GMT. Logos of the event sponsors are displayed at the bottom of the poster.

#StargardtsConnected #InformationDay #ZoomSession #CommunityZoomSessions #Stargardts #StargardtsDisease #StargardtsSupport #StargardtsCommunity

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Stargardt's Connected

2 weeks ago

We are really excited to share that one our fantastic trustees, Marina, is doing a fundraiser on behalf of Stargardt’s Connected.

Marina herself lives with Stargardt’s but has never let that keep her away from her passion of open water swimming, exploring open waters from rivers to lakes and even seas. Marina will be taking on a three-day expedition in the south of Bahia, Brazil: swimming 2-3km in a river, 5km in the sea and 2km from the mangrove to the ocean using kayaks for navigation.

We’re so proud, Marina and wishing you the best of luck on your adventure!

Click here for Marina’s JustGiving page: www.justgiving.com/page/marina-leite-2025

PD1: a photo of Marina standing by a beautiful lake in her wet suit after an open water swim.

#StargardtsConnected #Fundraiser #CharityTrustee #OpenWaterSwimming #Stargardts ... See MoreSee Less

We are really excited to share that one our fantastic trustees, Marina, is doing a fundraiser on behalf of Stargardt’s Connected.

Marina herself lives with Stargardt’s but has never let that keep her away from her passion of open water swimming, exploring open waters from rivers to lakes and even seas. Marina will be taking on a three-day expedition in the south of Bahia, Brazil: swimming 2-3km in a river, 5km in the sea and 2km from the mangrove to the ocean using kayaks for navigation.

We’re so proud, Marina and wishing you the best of luck on your adventure!

Click here for Marina’s JustGiving page: https://www.justgiving.com/page/marina-leite-2025

PD1: a photo of Marina standing by a beautiful lake in her wet suit after an open water swim.

#StargardtsConnected #Fundraiser #CharityTrustee #OpenWaterSwimming #Stargardts

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