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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
2 days ago

Wishing you all a very Merry Christmas 🎄✨

We’ve had an amazing 2025 filled with making meaningful connections, raising awareness of Stargardt’s, some exciting research news, and so much more. Thank you to all of our incredible supporters for your continued support this year, we’re so grateful and we couldn’t do it without you. We hope you and your families have a wonderful Christmas, and a very happy New Year! We can’t wait to make more memories and connections in 2026!

PD1: all of the Stargardt’s Connected trustees taking a selfie together wearing red Santa hats with Marina and Rob included via Zoom in the back.

#StargardtsConnected #MerryChristmas #CharityChristmas #Stargardts
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Wishing you all a ve
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Stargardt's Connected
6 days ago

Last Saturday, we had a charity stand @Tesco Cheshunt Brookfield where we helped to raise funds and awareness of Stargardt’s and Stargardt’s Connected.

We raised £163.34 and even made new connections with the Stargardt’s community, showing that a rare disease is not always as rare as we think.

We know how important it is continuously raise awareness of the charity and Stargardt’s and want to say a huge thank you to @tesco for hosting us, and to our amazing volunteers who gave up their time to support us throughout the day.

It’s opportunities like these that allow us to keep growing and continue supporting our incredible Stargardt’s Connected community. Thank you to everyone who stopped by, donated, or shared kind words, it truly means the world to us!

PD1: A photo of the Stargardt’s Connected stand at Tesco with Bhavna, Elise and our wonderful volunteers standing behind the table wearing their Santa hats.

#StargardtsConnected #Stargardts #Tesco #Fundraising #HertfordshireCharity #RaisingAwareness
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Last Saturday, we ha
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Stargardt's Connected
2 weeks 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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