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Stargardt's Connected
2 hours ago
Stargardt's Connected

Continuing our Trustees Week celebrations, today we would like to shine a spotlight on our amazing Board of Trustees Chair, Andi.

Having been with Stargardt’s Connected since the very beginning, our Chair has played a huge role in shaping who we are today. His commitment and expertise have been invaluable to both our Board of Trustees and the wider Stargardt’s Connected community.

Here’s what Andi had to say about his time so far as a Trustee:

Why he chose the role: “Having worked with most of the Trustees at the original Stargardt’s Day in 2017, I was really moved by their passion to continue to support the needs of people with Stargardt’s. I was very honoured to be invited to work with them to do that.

His favourite thing about being a Trustee: “For me, it’s really seeing the difference we’ve made. We’ve gone from just knowing a few people with the condition to building a brand new community of hundreds around the world, a movement of people wanting to connect and support each other. That’s really uplifting and motivating to see.”

Outside of his role as Chair, Andi enjoys creating paracord crafts, making bracelets, lanyards, and keychains. You may even have bought one at one of our events to help raise funds for the charity.

Thank you for everything you do, Andi. Your dedication continues to help our community grow and thrive every day!

PD1: a photo of Andi smiling wearing a lovely patterned shirt and black framed glasses.

#TrusteesWeek #StargardtsConnected #ThankYouTrustees #CharityTrustees #CommunitySupport
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Continuing our Trustees Week celebrations, today we would like to shine a spotlight on our amazing Board of Trustees Chair, Andi. 

Having been with Stargardt’s Connected since the very beginning, our Chair has played a huge role in shaping who we are today. His commitment and expertise have been invaluable to both our Board of Trustees and the wider Stargardt’s Connected community.

Here’s what Andi had to say about his time so far as a Trustee: 

Why he chose the role: “Having worked with most of the Trustees at the original Stargardt’s Day in 2017, I was really moved by their passion to continue to support the needs of people with Stargardt’s. I was very honoured to be invited to work with them to do that.

His favourite thing about being a Trustee: “For me, it’s really seeing the difference we’ve made. We’ve gone from just knowing a few people with the condition to building a brand new community of hundreds around the world, a movement of people wanting to connect and support each other. That’s really uplifting and motivating to see.”

Outside of his role as Chair, Andi enjoys creating paracord crafts, making bracelets, lanyards, and keychains. You may even have bought one at one of our events to help raise funds for the charity. 

Thank you for everything you do, Andi. Your dedication continues to help our community grow and thrive every day!

PD1: a photo of Andi smiling wearing a lovely patterned shirt and black framed glasses. 

#TrusteesWeek #StargardtsConnected #ThankYouTrustees #CharityTrustees #CommunitySupport
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Stargardt's Connected
1 day ago
Stargardt's Connected

Today we’re kicking off our Trustees Week celebrations with this month’s Stargardt’s Star, trustee, Rob McCann! 🌟

Here is Rob’s story:

“At school, I always seemed to struggle seeing the blackboard and for that reason sat on the front row, never with the cool kids at the back. I found reading difficult and I guess this was all part of Stargardt’s raising its ugly head.

After school, I trained as a dental technician (the person who makes false teeth!) but luckily for everyone’s mouths I was made redundant after a year. Then came warehouse work and learning to drive, my pride and joy was my mum’s old gold Mini which I had for two years before the dreaded eye test that showed I had Stargardt’s. I was told I’d never drive again…sadly, the car had to go.

I was diagnosed just before my 21st birthday, but I just put Stargardt’s behind me and carried on. Instead, I went on holiday to Morocco and had great fun. I’ve always loved photography, yes, it’s harder now trying to frame a shot, but with digital cameras you just take it again and throw away the one you don’t like. Ignoring Stargardt’s for 33 years was the biggest mistake of my life. When I finally told work in my 50s that I was partially sighted, everyone asked what it was, and then just got on with helping however they could. I never had to ask once.

When I was diagnosed, I was told there’d be no treatment in my lifetime. I didn’t believe that then, and I still don’t. Medicine has moved on so much. One day there will be a treatment. For anyone with Stargardt’s, the future is very bright.”

Rob’s tip: “Always have a backup! A spare magnifier, a torch, a plan B. I’m not saying be a pessimist, it’s just common sense.”

Rob’s honesty and optimism sum up what makes him such an inspiring part of our community. The commitment and support you show as a Trustee as well as your compassion, kindness and insight, makes you a valued member of the Board. We are so proud to have you on the Stargardt’s Connected team. Keep shining Rob!

PD1: Rob in a tuxedo and sunglasses.
PD2: Rob at home wearing a red shirt.
PD3: Rob sitting on the floor with a big smile.

#TrusteesWeek #StargardtsConnected #StargardtsStar #Trustees
... See MoreSee Less

Today we’re kicking off our Trustees Week celebrations with this month’s Stargardt’s Star, trustee, Rob McCann! 🌟

Here is Rob’s story: 

“At school, I always seemed to struggle seeing the blackboard and for that reason sat on the front row, never with the cool kids at the back. I found reading difficult and I guess this was all part of Stargardt’s raising its ugly head.

After school, I trained as a dental technician (the person who makes false teeth!) but luckily for everyone’s mouths I was made redundant after a year. Then came warehouse work and learning to drive, my pride and joy was my mum’s old gold Mini which I had for two years before the dreaded eye test that showed I had Stargardt’s. I was told I’d never drive again…sadly, the car had to go.

I was diagnosed just before my 21st birthday, but I just put Stargardt’s behind me and carried on. Instead, I went on holiday to Morocco and had great fun. I’ve always loved photography, yes, it’s harder now trying to frame a shot, but with digital cameras you just take it again and throw away the one you don’t like. Ignoring Stargardt’s for 33 years was the biggest mistake of my life. When I finally told work in my 50s that I was partially sighted, everyone asked what it was, and then just got on with helping however they could. I never had to ask once.

When I was diagnosed, I was told there’d be no treatment in my lifetime. I didn’t believe that then, and I still don’t. Medicine has moved on so much. One day there will be a treatment. For anyone with Stargardt’s, the future is very bright.” 

Rob’s tip: “Always have a backup! A spare magnifier, a torch, a plan B. I’m not saying be a pessimist, it’s just common sense.”

Rob’s honesty and optimism sum up what makes him such an inspiring part of our community. The commitment and support you show as a Trustee as well as your compassion, kindness and insight, makes you a valued member of the Board. We are so proud to have you on the Stargardt’s Connected team. Keep shining Rob! 

PD1: Rob in a tuxedo and sunglasses.
PD2: Rob at home wearing a red shirt.
PD3: Rob sitting on the floor with a big smile. 

#TrusteesWeek #StargardtsConnected #StargardtsStar #TrusteesImage attachmentImage attachment
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Stargardt's Connected
5 days ago
Stargardt's Connected

We are delighted to be exhibiting at Sight Village London 2025 on the 18th and 19th November.

Sight Village is a FREE exhibition that showcases a huge range of technology, support, and services for people with visual impairment.

On Tuesday 18th November 12:55-1:25pm we will be holding a seminar session where we will be joined by a representative from Meta Ray Ban who will be speaking about Meta Ray Ban AI functionality and how they may support someone with VI. After the session, they will join our stand, where there will be an opportunity to try the Meta Ray Ban glasses in demo mode and ask further questions.

Where: ILEC Conference Centre, 47 Lillie Rd, London SW6 1UD (nearest Tube is Earls Court Station)

When: Tuesday 18th November (10 - 4pm GMT)
Wednesday 19th November (9:30am - 3:30pm GMT)

We look forward to seeing you there.

PD1: a poster announcing that we will be exhibiting at Sight Village London 18th and 19th November.

#sightvillagelondon2025 #stargardtsconnected #sightvillagelondon #stargardts #metarayban @qac_official
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We are delighted to be exhibiting at Sight Village London 2025 on the 18th and 19th November.

Sight Village is a FREE exhibition that showcases a huge range of technology, support, and services for people with visual impairment. 

On Tuesday 18th November 12:55-1:25pm  we will be holding a seminar session where we will be joined by a representative from Meta Ray Ban who will be speaking about Meta Ray Ban AI functionality and how they may support someone with VI. After the session, they will join our stand, where there will be an opportunity to try the Meta Ray Ban glasses in demo mode and ask further questions.

Where:  ILEC Conference Centre, 47 Lillie Rd, London SW6 1UD (nearest Tube is Earls Court Station)

When: Tuesday 18th November (10 - 4pm GMT) 
Wednesday 19th November (9:30am - 3:30pm GMT)

We look forward to seeing you there. 

PD1: a poster announcing that we will be exhibiting at Sight Village London 18th and 19th November. 

#SightVillageLondon2025 #StargardtsConnected #SightVillageLondon #Stargardts #MetaRayBan @qac_official
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