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You are here:Home > Toolkit > Parent / Carer Support

Toolkit: Parent / Carer Support

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Stargardt's Connected
23 hours ago

Come and join us on Saturday 11th July for our next Community Zoom session featuring a special talk from Dr Louise Terry from Cardiff University about Stargardt’s disease research.

Dr Terry will be joining us to discuss an exciting study exploring how Stargardt’s disease affects the retina. She will explain the aims of the research, what participation involves, and why studies like this are so important in improving our understanding of inherited eye diseases. There will also be an opportunity to ask questions and find out more about how you can get involved.

In the second part, we will have our usual breakout sessions where you’ll have the opportunity to speak to others in smaller groups, share your experiences, and connect with others in the community.

Here is the link to register: us02web.zoom.us/meeting/register/xWM94psWQJiEJJ8E3sJAMw

PD1: A poster announcing the next Community Zoom session on Saturday 11th July at 12pm BST (UK time), featuring Dr Louise Terry from Cardiff University discussing Stargardt’s disease research and opportunities to get involved.

#StargardtsConnected #Stargardts #Community #Zoom #Research InheritedEyeDisease CardiffUniversity
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Stargardt's Connected
3 days ago

Last week Bhavna attended the United in Vision 2026 Conference in Fort Worth, Texas, which brought together two leading events, the Foundation Fighting Blindness VISIONS Conference and the Retina International World Congress, into one global gathering.

Over two inspiring and impactful days, attendees heard about the latest research advancements, emerging therapies, and the hope they bring for future treatments. The conference was also a powerful reminder of the importance of connection, collaboration, and working together to drive progress for the community.

One of the many highlights included meeting inspiring advocates Sam Seavey of The Blind Life and Brad Manning from Two Blind Brothers. Having the opportunity to speak with them personally and share how meaningful their advocacy, mission, and support are to the community was truly memorable.

A huge thank you to Foundation Fighting Blindness and Retina International for hosting such an outstanding event. We left feeling energized, inspired, and excited about what the future holds.

PD1: Bhavna standing with Sam Seavey from The Blind Life.

PD2: Bhavna standing with Brad Manning from Two Blind Brothers.

PD3: Bhavna standing with Joe Brennan (left) and Claudio Spera (right) from AAVantgarde Bio.

PD4: one of the conference talks with the audience in the front and a large screen in the back that reads ‘Innovating Access: AI that moves and grooves with you.’

@theblindlifesam @twoblindbrothers @fightblindness @retina_int

#StargardtsConnected #UnitedInVision2026 #RetinaInternational #FoundationFightingBlindness
#Research Community Advocacy
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Stargardt's Connected
4 days ago

Rita has now successfully completed her incredible London to Paris cycling challenge in support of Stargardt’s Connected, finishing her journey between the 10th and 14th of June, and raising an incredible £1500.

What began as an ambitious fundraising ride of over 300 miles has been an inspiring achievement from start to finish. From London, through Kent, across into France, Rita crossed the finish line at the Eiffel Tower in Paris after four unforgettable days on the road.

With a deeply personal connection to Stargardt’s Connected and its mission, Rita’s dedication has helped raise vital awareness and support for families affected by Stargardt’s, while contributing directly to our ongoing work to support research and seek a cure.

We are so grateful for her determination, strength, and generosity, and to everyone who donated and supported her along the way.

If you would still like to support Rita’s fundraising, her JustGiving page remains open:
www.justgiving.com/page/rita-parekh-patel-1?utm_medium=FR&utm_source=WA

PD1: a photo of Rita celebrating her win with a fellow cyclist in front the Eiffel Tower.

PD2: a photo of Rita cycling on her journey wearing her cycling gear and white helmet.

PD3: a photo of Rita giving her legs a well deserved stretch across her bike as she makes her way to France.

#LondonToParis #CyclingChallenge #StargardtsConnected #Fundraiser #RaiseAwareness
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