There is still time to Donate! - Dravet Syndrome UK

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May 30, 2026 3:07am EDT

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5KM EVERYDAY IN THE MONTH OF MAY

Over £15,000 Raised so Far!

There’s still time to support our Creative Director, Tom Birkbeck, as he nears the end of his 5km Everyday in May challenge for Dravet Syndrome

Throughout May, Tom and a dedicated team of 36 friends and family have been completing a 5km run, cycle or swim every single day to raise awareness and vital funds for Dravet Syndrome — a rare and severe lifelong form of epilepsy affecting his godson, Freddie. By the end of May, the team will have collectively completed over 5,000km, with many participants going above and beyond the daily 5km challenge.

Freddie was diagnosed at just 6 months old and continues to require ongoing medical treatment, weekly physiotherapy and speech therapy, while still facing daily seizures and constant one-to-one care. With funding for rare conditions like Dravet often limited, continued research is incredibly important.

DONATE HERE

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DRAVET SYNDROME UK

How Your Kind Donations Will be Spent

Although a cure for Dravet Syndrome remains elusive, ongoing research in genetic epilepsy brings us closer to this goal through advancements in gene therapy. Unfortunately, funding for rare syndromes like Dravet is often inadequate, but with the support of the community and the official charity, Dravet Syndrome UK, we continue to push the cause and raise as much money as we can specifically for the research element of the charity.

DONATE HERE

About Freddie

Nine-year-old Freddie Truelove was diagnosed with Dravet Syndrome in 2018, following 3 prolonged seizures at only 6 months old. Dravet Syndrome is a genetic epilepsy, meaning he will not 'grow out' of the seizures, and there is currently no cure.

Despite trying 18 different anti-epileptic medications, undergoing surgery, and living on a medical ketogenic diet, Freddie continues to have frequent seizures. In December 2023 alone, Freddie had to endure over 100 tonic-clinic seizures and countless myoclonic, absence and prolonged focal seizures.

DONATE HERE