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Stargardt's Connected
59 minutes ago
Stargardt's Connected

Our next Trustee to take centre stage this week is the fantastic, Marina @mleitebrandao

Marina not only brings professional expertise to Stargardt’s Connected but also a personal understanding of life with Stargardt’s. Alongside her work with Retina International, she contributes a wealth of knowledge, experience, and compassion to our community.

Why Marina chose the role: “As a person with Stargardt, I believe that if we build a solid worldwide community we can better support ourselves, help research, and promote positive change. I joined the charity because I want to contribute, in the end, we are all people facing similar barriers, and the charity can definitely improve quality of life for our community.”

Favourite thing about being a Trustee: “My favourite thing about being part of Stargardt’s Connected is that the charity is deeply connected with its mission and respects everyone. By being honest and true to its values, the charity delivers on its purpose, step by step, people are being supported, and the charity achieves its goals.”

Fun fact about Marina: “I like to perceive Stargardt’s as an opportunity to keep myself active and creative. It forces me to find or to invent solutions for the barriers I face throughout life,” something Marina really commits to through her love of open water swimming.

Marina is currently raising money for Stargardt’s Connected through her incredible open swimming competition. Here is Marina’s JustGiving page: www.justgiving.com/page/marina-leite-2025

PD1: Marina posing with her cane wrapped around her bag and is wearing a white top, blue jeans and black sunglasses.

PD2: Marina posing next to open water in her wet suit after an open water swim.

Thank you, Marina, for everything you bring to our community.

#TrusteesWeek #StargardtsConnected #ThankYouTrustees
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Our next Trustee to take centre stage this week is the fantastic, Marina @mleitebrandao 

Marina not only brings professional expertise to Stargardt’s Connected but also a personal understanding of life with Stargardt’s. Alongside her work with Retina International, she contributes a wealth of knowledge, experience, and compassion to our community.

Why Marina chose the role: “As a person with Stargardt, I believe that if we build a solid worldwide community we can better support ourselves, help research, and promote positive change. I joined the charity because I want to contribute, in the end, we are all people facing similar barriers, and the charity can definitely improve quality of life for our community.”

Favourite thing about being a Trustee: “My favourite thing about being part of Stargardt’s Connected is that the charity is deeply connected with its mission and respects everyone. By being honest and true to its values, the charity delivers on its purpose, step by step, people are being supported, and the charity achieves its goals.”

Fun fact about Marina: “I like to perceive Stargardt’s as an opportunity to keep myself active and creative. It forces me to find or to invent solutions for the barriers I face throughout life,” something Marina really commits to through her love of open water swimming. 

Marina is currently raising money for Stargardt’s Connected through her incredible open swimming competition. Here is Marina’s JustGiving page: https://www.justgiving.com/page/marina-leite-2025

PD1: Marina posing with her cane wrapped around her bag and is wearing a white top, blue jeans and black sunglasses. 

PD2: Marina posing next to open water in her wet suit after an open water swim. 

Thank you, Marina, for everything you bring to our community. 

#TrusteesWeek #StargardtsConnected #ThankYouTrusteesImage attachment
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Stargardt's Connected
1 day 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
2 days 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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