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

Toolkit: Parent / Carer Support

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To be completed.

To be completed

In their own words

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News from our Faceboook page

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Stargardt's Connected
23 hours ago

🌟We are so pleased to share the story of fabulous Flo, our last Stargardt’s Star of 2025! 🌟

“I was born in Leicester but grew up in Rome after my family moved there when I was five. Italy will always be a huge part of who I am. It’s where I discovered my love for music and learned to adapt after being diagnosed with Stargardt’s disease.

At 18, I made the big move back to the UK to study Music at Cardiff University, and I’m now completing my Master’s in Music Therapy. Moving countries, living independently, and studying while navigating sight loss hasn’t always been easy, but it’s taught me resilience and self-belief.

Two years ago, after going through some personal challenges, I took up running and it’s completely changed my life. This year I ran the Eryri Marathon, my biggest challenge yet, to raise awareness and funds for Stargardt’s Connected, supporting people living with sight loss. Every mile was emotional, but it reminded me how far I’ve come, from a little girl in Rome struggling to read, to running a marathon and studying what I love.”

Flo’s advice: “You can do anything you set your mind to don’t let anyone say you can’t!”

Flo raised a whopping £821 for Stargardt’s Connected as part of her Eryri Marathon challenge. Flo, your strength, passion, and determination are truly inspiring. Thank you for sharing your journey with us.

PD: a photo of Flo at her graduation wearing a graduates cap and gown.

#StargardtsStar #Inspiration #SightLoss #Resilience #RunningForACause #MusicTherapy #StargardtsConnected
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🌟We are so please
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Stargardt's Connected
4 days ago

On Tuesday we had a wonderful Christmas get-together for the London Stargardt’s Connected group, and it was such a lovely evening. Families and people living with Stargardt’s came together to celebrate over an amazing dinner at @diwanabhelpoorihouse in Euston.

We enjoyed delicious food, festive fun, Christmas crackers and lots of laughter. Most importantly, it was a great opportunity to catch up, share experiences and spend time with each other.

It was a fantastic way to welcome the festive season. Thank you to everyone who joined us and made it so special. ✨

PD: Everyone who attended the dinner sat around the table wearing santa hats and festive glasses.

#StargardtsConnected #Stargardts #ChristmasDinner #ChristmasDo
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On Tuesday we had a
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Stargardt's Connected
2 weeks ago

Come and join us for our last Community Zoom session of the year on the 6th December 12-1:30pm GMT (UK Time).

AAantgarde Bio, a gene therapy company developing pioneering treatments for inherited retinal dystrophies (IRDs), are delighted to present an overview of their clinical trials in Stargardt Disease.

Following on from AAVantgarde Bio’s presentation at our Information Day, we are delighted to welcome back Dr Claudio Spero to our next Community Zoom session. 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.

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.

Here is the link to register: us02web.zoom.us/meeting/register/TKgRTYsiTASvzV9KGcp7ig

PD1: a yellow poster announcing the next community Zoom session on the 6th December at 12pm GMT.

#StargardtsConnected #Stargardts #Community #CommunitySupport
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Come and join us for
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