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Toolkit: Self Help and Independence

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Stargardt's Connected
4 hours ago

For our final day of Trustee celebrations, we would like to shine a light on Louise.

With over 25 years of experience in clinical research, and the last decade focused on rare diseases, Louise brings a wealth of scientific insight to the Stargardt’s Connected Board.

Here’s some what Louise had to say:

Why Louise chose the role: “Most of my work is office-based, so I don’t often get to interact with participants on the trials I work with. Last year I joined the Stargardt’s Connected Conference and really enjoyed meeting members of the community and talking about the clinical trials process. Medical research in Stargardt’s is really exciting at the moment, and it’s so important that the community understands what opportunities might become available and what it means to take part in trials. I found the conference really inspiring, and when the team asked me to be more involved, I jumped at the chance! I hope I can bring my experience in clinical research to help Stargardt’s Connected navigate these changes and push the science forward.”

Louise’s favourite thing about being a Trustee: “The people I work with. It’s been great to get to know the other Trustees and members of the community. Seeing how everyone shares experiences and supports each other is truly special.”

Fun fact: Every Monday is choir night! Louise sings in a women’s choir, the perfect way to unwind, de-stress, and focus on the music.

Thank you, Louise, for your expertise, enthusiasm, and for helping us bridge the gap between research and our community.

PD1: a photo of Louise smiling and wearing a green shirt
PD2: Louise with her choir all in black robes with yellow and blue umbrellas
PD3: a photo of Louise wearing a white shirt and stripy blue and white jeans

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

Next up in our Trustees Week celebrations is the incredible, Toby.

Toby, who is the charity Treasurer, has been part of Stargardt’s Connected since the very beginning and continues to bring energy and dedication to everything he does.

Why Toby chose the role: “I became a trustee almost by accident! I was asked to speak at a ‘Stargardt’s Day’ hosted by UCL and Moorfields in 2017, and us panellists decided to set up a charity on the back of it to support the community. It’s grown a lot since then, but I still do it to use my experience and skills to help those affected by the condition.”

Toby’s favourite thing about being a Trustee: “My favourite thing about being part of Stargardt’s Connected? I’d say three things, sharing experiences with other Stargardters, meeting regularly with lovely people, and feeling that sense of achievement as we expand our services and drive research forward.”

Fun facts about Toby: “I was once an extra playing a GI in Good Morning Vietnam, and I still participate in lots of sports including golf and skiing (yes, it’s still possible!).

Toby is also a fantastic fundraiser as he recently raised over £3,000 for Stargardt’s Connected by cycling tandem from Marble Arch to the Arc de Triomphe, an incredible achievement!

Thank you, Toby, for your leadership, positivity, and unstoppable commitment to our community!

PD1: a black and white photo of Toby wearing a suit.

PD2: a photo of Toby at the Arc de Triomphe after successfully completing his tandem cycle fundraiser. Toby is on the right with his guide on the left.

#TrusteesWeek #StargardtsConnected #ThankYouTrustees #CharityTrustees
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2 days 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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