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Evan’s Story

We are pleased to share this blog, written by Evan, in memory of his cousins, Ellie Mae and Caleb who both had CLN2 Batten disease: “Whoever said, “Never meet your heroes” obviously had the wrong ones. Because I’ve met my…

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Anna’s Story

Anna's mun Laura shares the highs and lows of her diagnosis Anna was diagnosed with CLN3 Batten disease two years ago. She struggles with depression, anxiety, hallucinations, sleep and terrible meltdowns. It is the most devastating and heartbreaking disease. Anna…

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Frank’s Story

BDFA Trustee Bob shares his family story about his son Frank Heart-breaking news In October 2012 a Neurologist gave us the worst imaginable news. The youngest of our three children, Frank, was diagnosed with Late Infantile Batten Disease, a rare,…

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Remembering Beautiful Bertie

Today is to raise awareness and celebrate the people in our community but we also remember to families who have lost loved ones. On Batten disease awareness day we remember all of the children and young people who we have…

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