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Useful Links

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For further information and support concerning Stargardt's disease you can also visit:

The Macular Society (​https://www.macularsociety.org/)
Helpline: 0300 3030 111

Retina UK (https://retinauk.org.uk/)
Helpline: 0300 111 4000

Victa Parental Portal (https://www.victaparents.org.uk/)

News from our Faceboook page (opens in new tab)

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Stargardt's Connected
6 hours ago

We are pleased to announce our Stargardt’s Star for September, Kamara 🌟 Here is Kamara’s story:

My journey with Stargardts started in Lagos Nigeria, when at the age of 6. I was having difficulty reading and I went to the optometrist who prescribed my 1st pair of glasses. In a few weeks I lost the glasses and I had to go for another test; where I was then referred to a consultant eye ophthalmologist. The ophthalmologist was surprised at the level of my vision loss but unfortunately at the time, further testing was not available in Nigeria.

In December 2019, I travelled to New York city with my mom in search of answers. I met with one of the best paediatric ophthalmologists at Columbia University medical center and went through a series of testing. At my 1 year follow up appointment in December 2020 I finally got my diagnosis of Stargardts disease.

Living with vision loss in Nigeria was very challenging as I attended a mainstream school where there were no accommodations for my needs. I quickly learnt how to speak up and advocate for myself and was able to get my teachers to have me seated at the front row and make use of magnifiers for reading.

This experience led me to start my IG page Kamara Ohiaeriaku and I was able to organise a fundraiser for Pachelli school for the blind and visually impaired in Nigeria where I donated cash and items to support them. In 2022, we moved to the UK and since then, I have been able to access more support in school, which has helped me continue learning while also becoming more confident about asking for what I need.

I am passionate about advocating for people with additional needs, especially people living with invisible disability. I have had the opportunity of speaking in my school’s assembly and working with my head of year to raise £210.80 for Stargardts connected. I love swimming, learning about random fun facts, listening to music, writing and I am currently working on publishing my first book!
 
PD1: a photo of Kamara wearing black trousers, a red t-shirt and black cardigan.
PD2: a photo of Kamara presenting a cheque to Pacelli School for the Blind

#StargardtsConnected #Stargardts #StargardtsStar #CharityCommunity
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Stargardt's Connected
4 weeks ago

Thank you to the Goffs Oak Community Association for their generous donation of £1500 to Stargardt’s Connected. Stargardt’s Connected was one of the 3 chosen charities they supported at their Summer Fayre this year.

The money raised goes towards our mission of supporting the community, raising awareness and funding research and we’re really grateful for your support.

PD: Umesh is standing with Mayor Patsy Spears holding a large cheque for £1500.

#StargardtsConnected #RaisingAwareness
#GOCA
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Stargardt's Connected
1 month ago

We are so pleased to share our Stargardt’s Star for August, John Gill. ⭐

We asked John to tell us a little bit about his experiences, and here’s what he had to say:

“Ten years ago, I was registered SSI (blind) after a diagnosis of Stargardt’s was confirmed by genetic testing at Moorfields Eye Hospital. Throughout my sixties, I experienced problems with my sight; I stopped driving, lost my ability to read and started to trip and fall regularly. However, because of the relatively slow progress of the disease, I was able to adapt to my changing circumstances. I am grateful for that and for the late onset of my condition.

I am blessed with a wide circle of friends and thankful for their unfailing help and support. Before retirement, I spent four happy decades working in the arts and I am currently on the Board of my local orchestra, Brighton Philharmonic. I am also proud to have been appointed MBE for services to arts and education in 2022.

There are so many assistive technologies available now and in development. I think it important at any age to be aware of every opportunity, to learn new skills, and to embrace change. I ask for help when I need it, maintain my independence as best I can, and regularly go to performances, theatre and music with friends, keeping the crowds at bay with my long white stick.

Being able, for the first time, to meet other people living with Stargardt’s at the 2024 Stargardt’s Connected Conference was life-changing for me. I look forward to the next meeting in the autumn with eager anticipation.”

Here is the link to register for our upcoming conference: stargardtsconnected.org.uk/conference-registration/

John was also one of the winners of last year’s Calendar Competition with a photo of the Guggenheim Museum Bilbao (swipe left to see his winning photo). If you would like to enter this year’s competition, here is the link: stargardtsconnected.org.uk/calendar-entries/

John, your resilience, independence and enthusiasm for life are truly inspiring. ⭐

PD1: a photo of John smiling wearing a white shirt.
PD2: John’s winning photo of the Guggenheim Museum Bilbao

#StargardtsStar #Stargardts #StargardtsConnected
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