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

Toolkit: Self Help and Independence

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News from our Faceboook page

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Stargardt's Connected
16 hours ago

Come and join us on Saturday 20th June for our next Community Zoom session about sports and physical fitness.

We will be joined by two of our fantastic and sporty trustees Toby and Marina to talk about their experiences participating in sport with Stargardt’s. After this, the fantastic Shreya Mehta, a qualified personal trainer who also Stargardt’s, will guide us through a physical fitness session.

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/xJ40fEHLRC6cc6HsfLW8rw

PD1: a yellow poster announcing the next Community Zoom session on Saturday 20th June at 12:00pm BST (UK time).

#StargardtsConnected #Stargardts #Community #Zoom
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Come and join us on
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Stargardt's Connected
4 days ago

A huge congratulations and heartfelt thank you to the incredible Davis family Alan, Rachael and Ruby, who have successfully completed the Three Peaks Challenge in support of Stargardts Connected.

Over one unforgettable adventure, they conquered Ben Nevis, Scafell Pike and Snowdon, facing unexpected May snowfall, fighter jets soaring overhead and a breathtaking sunrise, all while raising awareness of Stargardt’s disease and the daily realities faced by those living with it.

This challenge was especially meaningful as their daughter Ruby, aged 13, lives with Stargardt’s disease. Despite the tough climbs, aching legs and sore knees, they pushed on with determination, passion and purpose, and lots of energy to spare for Ruby.

Together, they have raised an incredible £6,153 for Stargardts Connected. Every pound raised will help support our mission to raise awareness, give support and seek a cure.

We are beyond grateful for your commitment, courage and generosity. You have inspired our community and helped shine a light on Stargardt’s and our wonderful community.

Please join us in celebrating this amazing family and their outstanding achievement! ❤️

For more information about the Davis family fundraiser please see their JustGiving page here: www.justgiving.com/page/three-peaks-stargardts

PD1: a poster created by the Davis family that reads ‘We did it’ with three pictures (from each of the three peaks).

#ThreePeaksChallenge #StargardtsConnected #StargardtsDisease #FundraisingHeroes #RareDiseaseAwareness
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A huge congratulatio
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Stargardt's Connected
5 days ago

We are delighted to announce June’s Stargardt’s Star, Roger Davies!

Roger lives in the beautiful riverside village of Cookham and is the organiser of the Berkshire, Oxfordshire, Wiltshire and Gloucestershire (BOWG) support group for people with Stargardt’s and a much-valued member of the Stargardt’s community.

Roger was diagnosed with Stargardt’s at age 60 and receiving a diagnosis later in life brought its own challenges. Initially, many people assumed he had AMD rather than Stargardt’s because of his age but genetic testing helped provide clarity and a better understanding of what was happening to his sight.

He is inspired by meeting people who have lived with sight loss from a much younger age and is passionate about creating opportunities for people to connect and support one another through the BOWG group.

His positivity, encouragement and willingness to share his experiences have made Roger a great source of support for others navigating their own journeys.

When he’s not organising group activities, Roger enjoys dog walking, keeping active at the gym, genealogy and pursuing his passion for photography.

We are proud to celebrate Roger this month. His dedication to bringing people together, supporting others, and raising awareness of Stargardt’s makes him a truly deserving Stargardt’s Star. Keep shining, Roger!

If you are affected by Stargardt’s, live in Berkshire, Oxfordshire, Wiltshire or Gloucestershire and want to connect with other people in your community, please do contact Roger at: [email protected].

PD: a photo of Roger wearing smiling and wearing his sunglasses.

#StargardtsConnected #StargardtsStar #SupportGroup #Community #LivingWithStargardts PeerSupport Inspiration
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We are delighted to
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