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You are here:Home > Toolkit > Self Help and Independence

Toolkit: Self Help and Independence

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Stargardt's Connected
10 hours ago

We are really excited to announce this month’s Stargardt’s Star, Tilly ⭐️

Tilly is 18 years old and was diagnosed with Stargardt’s at the age of 9. Receiving a diagnosis at such a young age was a big adjustment, but Tilly has grown into a positive, determined and inspiring young person who doesn’t let Stargardt’s hold her back.

She is currently an A Level student studying Biology and Psychology, and is excited to be starting university in September having already received a place. She is hoping to go on to become either a children’s nurse or a therapist one day, where she can support and care for others.

Tilly has always had a strong love for sports and movement. She grew up as a gymnast and continues to enjoy staying active through dancing and swimming. Her energy, resilience and enthusiasm shine through in everything she does.

She is also a valued and active member of the Stargardt’s Connected community, regularly attending and supporting Zoom sessions with children and young people and is an excellent role model within the group, offering encouragement, sharing her experiences, and helping others feel less alone on their own journeys.

We are so proud to celebrate Tilly this month. Her strength, kindness and determination make her a truly special part of our community. Keep shining, Tilly ✨

PD1: a yellow frame with two photos taken by Tilly, one at Disney World of the Disney castle with fireworks in the background, and the other of a sun-adorned building with a palm tree. The black text reads May Stargardt’s Star - Tilly.

#StargardtsConnected #StargardtsStar #ChildrenAndYoungPeople #Inspiration #Community StrongerTogether
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Stargardt's Connected
2 days ago

As one chapter comes to an end, another begins 💙

Today marks the end of Ethan’s school journey, a big milestone and the start of an exciting new chapter ahead. Ethan has been a huge inspiration behind Stargardt’s Connected, and it’s been amazing to see everything he has achieved over the years.

We’re so proud of the determination, resilience and ambition he continues to show, and we know those qualities will take him far in whatever comes next.
Wishing Ethan the very best of luck in his upcoming A Level exams and all the opportunities ahead. You’ve got this! ✨

PD1: a photo of Ethan on his first day of reception at 4 years old.

PD2: a photo of Ethan today on his last day of school at 18 years old.

#GoodLuckEthan #EndOfAnEra #StargardtsConnected #ALevels #TheLimitIsWhatYouChoose
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Stargardt's Connected
4 days ago

Join us on Saturday 16th May at 12pm (BST - UK time) for our next Community Zoom session.

For this session, we will be joined by our wonderful trustee Robert McCann bringing us all the top tips and advice on how to use assistive tech to enhance our daily lives living with Stargardt’s. After Rob’s presentation, we will have some time to ask questions as well as share your own experiences with using tech in your everyday lives.

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/SXWwRc5PSTClKJRNge3sYw

PD1: a yellow poster announcing our next Community Zoom Session on Saturday 16th May at 12pm (BST - UK Time).

#StargardtsConnected #Stargardts #CommunitySupport #AssistiveTech
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Join us on Saturday
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