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You are here: Home > Articles by: James Burden

Posts by James Burden

Hyde Park Picnic August 2017

By James Burden | 25/08/2017 | 0
People enjoying the Stargardt's Connected picnic

One of the things that Stargardt’s Connected is keen on doing is holding informal networking events for people affected by Stargardt’s and their families. It is a great way to…

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Stargardt’s Day March 2017

By James Burden | 25/03/2017 | 0
Professor Bainbridge speaking at Stargardt's Day

Dr Andi Skilton organised Stargardt’s Day – an information day for patients and professionals. Bhavna Tailor was asked to help shape the day and speak on the patient panel about…

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News from our Faceboook page

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Stargardt's Connected
1 day ago

We’re celebrating Trustees’ Week and shining a spotlight on the incredible people who help guide and shape our charity.

Our Board of Trustees plays a vital role in helping us achieve our vision of giving support, raising awareness and seeking a cure, ensuring that the voices, experiences and needs of the Stargardt’s community remain at the heart of everything we do. Swipe to discover 5 key strengths and skills our trustees bring to Stargardt’s Connected.

Lived Experience & Empathy: Having trustees with lived experience keeps our community at the heart of every decision.

Financial Stewardship: Responsible financial oversight helps us make the most of every donation and grant, directing resources where they make the most difference.

Strategic Vision: Looking ahead, setting priorities and helping shape our future from growing our peer support network to championing greater access to research and clinical trials.

Good Governance & Integrity: Making sure our charity is run responsibly, ethically and transparently, protecting the people who place their trust in us.

Professional Expertise & Connections: Bringing together a wealth of knowledge, experience and connections to open doors, build partnerships and strengthen our voice across the wider rare disease and VI communities.

Being a trustee is a voluntary commitment that takes time and dedication. We are so grateful to our Board, Andi, Rob, Toby, Marina, Rea and Louise, for the skills and support they bring to Stargardt’s Connected. You are all stars ⭐️

PD1: the Stargardt’s Connected Trustee Board celebrating our 6th year as a registered charity.

PD2: yellow background with a person walking with a cane and a dog and text reading ‘Lived Experience.’

PD3: yellow background with a noteboard and text reading ’Stategic Vision.’

PD4: yellow background with a clipboard and text reading ’Financial Stewardship.’

PD5: yellow background with people doing jigsaw puzzles and text reading ’Good Governance & Integrity.’

PD6: yellow background with people co-working and text reading ’Professional Expertise & Connections.’

#StargardtsConnected #StargardtDisease #TrusteesWeek #Volunteering #ThankYouTrustees ...

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Stargardt's Connected
2 days ago

We are delighted to announce that Stargardt’s Connected has been chosen again to be part of the Co-op Local Community Fund!

The money raised through this fund helps us provide vital support for our community through our virtual and in-person events, activities and support services and we are delighted to be supported in continuing this important work.

But we need your help! Anyone in the UK can choose Stargardt’s Connected as their cause to support through the Co-op. The more Co-op members who select us, the more money we could receive and the more we can do to support people living with Stargardt’s and their families.

Our cause number has changed this year so even if you have chosen us before, please do this again with our new cause link below. It only takes a few moments to choose us, but it could make a real difference to our community.

Here is the link to support us:

membership.coop.co.uk/causes/103998

Please share this post with your friends, family and colleagues. Every bit of support really does count!

Together, we can make a difference.

PD: a yellow poster announcing that you can choose to support Stargardt’s Connected through your Co-Op membership.

#StargardtsConnected #CoopUK #CoopLocalCommunityFund #Stargardts #CommunitySupport CharityFundraising RaisingAwareness ...

We are delighted to
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Stargardt's Connected
4 days ago

We are delighted to announce November’s Stargardt’s Star, Sam Seavey!

Here is Sam’s journey:

“I was diagnosed with Stargardt’s disease at age 11. Being the only visually impaired student in school often left me feeling isolated and different. But those experiences taught me to step outside my comfort zone, build confidence, and make connections. Living with Stargardt’s has taught me to adapt, think outside the box, and find creative solutions to life’s challenges. It’s made me incredibly resourceful! Those early feelings of isolation are also why I’m so passionate about helping others with vision loss. Through my YouTube channel, The Blind Life, I share technology, tips, and personal experiences to help others feel less alone and empowered to live their best blind life. I’m excited to share more at the Stargardt’s Connected conference this year in London!”

Sam’s dedication to sharing technology, tips, and encouragement through The Blind Life has made him a vital source of support for people navigating sight loss around the world. His positivity, resourcefulness, and drive to ensure no one feels isolated make him a truly deserving Stargardt’s Star. Keep shining, Sam!

If you are attending the Stargardt’s Connected Conference in London this year, be sure to catch Sam in our morning drop in tech lab and in his afternoon talk. If you have not yet registered, you can still register for our waiting list or attend the afternoon talks online. Here is the link to register: stargardtsconnected.org.uk/conference-registration/

The Blind Life

PD1: a photo of Sam smiling and holding his cane.

PD2: a photo of Sam smiling looking at the camera holding his cane.

#StargardtsConnected #StargardtsStar #TheBlindLife #LivingWithStargardts #AssistiveTech ...

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