News

Rob in Lockdown

Rob McCann, one of our Stargardt’s Connected Trustees, needed to find something to occupy himself at the start of lockdown. What started out feeling like an abundance of free time to go on long walks, after a while felt like a daily grind. Perhaps surprising for someone with a sight-loss condition, Rob began to teach…

Latest Research Presentation

We were fortunate to recently host a Zoom session with Professor Michel Michaelides BSc MB BS MD FRCOphth FACS of UCL Institute of Ophthalmology and Moorfields Eye Hospital. You can watch a video of this session on our Latest Research page, and also see the question and answers as submitted before and during the session.

Alice’s story

I first experienced problems with my sight at 22, when I was in the middle of a degree in Vocal Studies at the Royal Northern College of Music. I had noticed problems finding my friends in busy places and had a few scary moments when driving, so I went for a routine eye test, thinking…

Stargardt’s Connected achieves charity status

We are absolutely thrilled to announce that Stargardt’s Connected is now a Registered Charity – the first Stargardt’s charity in the UK! We are extremely proud to have achieved this and know that it will open so many doors to help reach our mission statement of raising awareness, giving support and seeking a cure. If…

Sarah Stiffin and the London Marathon

We are extremely grateful and excited for Sarah Stiffin who is running the London Marathon for Stargardt’s Connected. Please support Sarah and the work we do by donating here: https://www.justgiving.com/crowdfunding/sarah-stiffin All money raised will go towards supporting our Mission Statement: raising awareness, giving support, seeking a cure.

Professor Michel Michaelides

Medical Advisor for Stargardt’s Connected Michel Michaelides BSc MB BS MD(Res) FRCOphth FACS is a Consultant Ophthalmologist at Moorfields Eye Hospital in the departments of Medical Retina, Genetics and Paediatric Ophthalmology; and is a Professor of Ophthalmology at the UCL Institute of Ophthalmology. He is a recipient of a Career Development Award from the Foundation…

Stargardt's Connected

2 days ago

TTHIS SUNDAY IS CENSUS DAY!
Don’t forget to complete online if you can, it is accessible with screen readers on PC, MAC, iOS and android devices. Feedback from the VI community has been good so far, it saves as you go along, but allow time to complete the questions.
Telephone suport: 0800 141 2021 Find out more, including video help : census.gov.uk You can also ask for your unique 16 digit access code by text instead of trying to find it on your letter. census.gov.uk/en/request/access-code/enter-address/

#Census2021 #accessiblecensus
(Image shows one of our members who has Stargardts, sitting at a desk looking at a MAC computer about to start the Census 2021 online using accessibility features. Vicky has dark hair and is wearing anti-glare screen glasses and over ear headphones.) ... See MoreSee Less

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Amazing portrait! Thanks so much Anna Judge, Jill Nalder (the inspiration behind the hit C4 Series It’s a Sin) and WestEnders, for raising awareness of Stargardt’s and helping to fundraise for Stargardt's Connected! 💕
Picture Description: Jill Nalder smiling holding a winning portrait of herself drawn by artist Anna Judge.We love this winning picture from Sky TV Portrait Artist of the Week...beautifully capturing our own Jill by Anna Judge...find her on Insta @annajudgeart. We also know that the artist has a connection to the Stargardts Connected charity. stargardtsconnected.org.uk/

Stargardt’s disease is an inherited progressive disease that affects the retina.

The disease causes a blurring of vision, especially the ability to see fine details, for example difficulty reading a book and recognising faces.

It is most commonly diagnosed in children and young adults, but can also be diagnosed in middle age and less often in older people. It affects approximately one in 10,000 people and therefore is classed as a rare condition.

There is currently no treatment or cure for Stargardt’s disease.

Please click through and give whatever you can to this charity offering help and support to those affected by this hidden disability.

Thank you.

stargardtsconnected.org.uk/donate/ ... See MoreSee Less

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4 days ago

Stargardt’s Connected are holding their Children and Young People’s Zoom Session this Saturday 20th March 11-12pm This is for any Child or Young Person aged 8-17 with Stargardt’s. This is a fantastic opportunity for children and young people with Stargardt’s to get together informally and have fun and share experiences. In this session we will have a bit of an Easter theme to our quiz and will be introducing our Easter Design Competition.

Register in advance for this meeting:
us02web.zoom.us/meeting/register/tZMkc-uvqDsiHdNwuxNWTLazFHDm7gfVItyD ... See MoreSee Less

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News

Rob in Lockdown

Latest Research Presentation

Alice’s story

Stargardt’s Connected achieves charity status

Sarah Stiffin and the London Marathon

Professor Michel Michaelides

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Stargardt’s Connected is a member of the Genetic Alliance UK