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Robert’s story

I was diagnosed with Stargardt’s in the summer of 1981, shortly before my 21st birthday. On the day of diagnosis I was given the option to be registered partially sighted but declined the offer. I was also informed that, as of that day, I was not allowed to drive anymore; the latter being the hardest…

Yvonne’s story

There are several unique experiences peculiar to living with Stargardt’s disease; some very personal and others played out quite publicly. Through these experiences I learn the truths that mould and guide my existence. Like most Stargardters, I recall needing to look at my classmates’ notes to get what was on the board at around the…

Katie’s story

On the 13th June 2017, I went off to a routine eye appointment that I attended every two years. I thought absolutely nothing of it as I drove there, but thought I had better mention to the optician that I was struggling to focus in low lighting and it was taking longer for my eyes…

Social Meet Up November 2018

In November 2018, Stargardt’s Connected organised another pub meet up in London for the Stargardt’s community after the Sight Village Exhibition in Kensington. This was a fantastic opportunity for people to meet up, chat and share stories and tips.

Nutrition Project and Art Therapy Session September 2018

In September 2018, Stargardt’s Connected organised a nutrition chat for Stargardt’s families. The discussion was led by Dr Rosie Gilbert from Moorfields Eye Hospital and Dr Andi Skilton from NIHR Biomedical Research Centre Moorfields Eye Hospital. A summary of the discussion can be found on the Nutrition Project page. Meanwhile, while the parents chatted, the…

Hyde Park Picnic August 2018

We held our second picnic at the Hyde Park and we had people travel from far and near to join us. We even had Dave Ellis, a world champion para-triathlete, who came all the way from Derbyshire with his family to our picnic. It was wonderful to meet so many talented and inspirational people and…