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Stargardt's Connected
7 hours ago

Our next incredible Trustee to be celebrated this week is Rea.

Trustees play such an important role in keeping Stargardt’s Connected focused on its mission, and Rea really brings the passion and fight we need to make this happen.

Here’s Rea’s Trustee story:
Why she chose the role: “Because I had set up a patient organisation around a rare disease previously, I wanted to bring my expertise and knowledge into Stargardt’s Connected. I find it amazing that actually, I have learnt so much from being a Trustee of Stargardt’s Connected and it has added such great value to my life.”

Favourite thing about being a Trustee: “As a Trustee I have watched Stargardt’s Connected grow to become a sanctuary for all those with Stargardt and an information hub for everybody working within the field. People with rare diseases and their families have such a lonely journey, Stargardt’s Connected has ensured that nobody with Stargardt’s needs to walk this journey alone. The privilege of watching the magic happen when our community comes together to talk, laugh, exchange information, support each other, raise funds and live their lives to the fullest.”

Thank you, Rea, for your passion, insight and commitment to ensuring nobody faces Stargardt’s alone.

PD: the whole Stargardt’s Connected Board of Trustees sitting around a dinner table at our away day dinner in Victoria this year.

#TrusteesWeek #StargardtsConnected #ThankYouTrustees #CharityTrustees
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Our next incredible
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Stargardt's Connected
1 day ago

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 Image attachment
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Stargardt's Connected
2 days ago

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 Trust
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