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5km Every Day in May for Dravet Syndrome

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May 19, 2026 3:07am EDT

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5k Every Day in May for Dravet

FUNDRAISING FOR DRAVET SYNDROME

5km Every Day in the Month of May

Dravet Syndrome is a severe, incredibly rare, and lifelong form of epilepsy which is characterised by frequent and prolonged seizures.

Freddie Truelove, 9, godson of our Creative Director Tom Birkbeck, 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.

The family want to raise money specifically for research purposes to help advance medical science and work toward finding a cure. As Dravet Syndrome is such a rare disease, affecting around 1 in 19,000 children, the charity relies heavily on fundraising and needs as much support as possible.

This is a cause very close to our hearts and we’re committing to matching all donations from House of Bruar customers up to £1000 (see more information below).

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Meet Freddie-Bo Truelove

5k Every Day in May for Dravet

Tom Birkbeck and a team of 36 friends and family are completing a 5k run, cycle, or swim every day throughout May. Freddie’s sister, Daisy, 7, is also taking part by doing 5km daily to raise funds, while Freddie’s school class are contributing a collective 5km during P.E. lessons.

5k Every Day in May for Dravet

"Freddie-Bo is the reason behind everything we do. He’s changed our lives, as he does the lives of everyone who knows him, in ways that are impossible to put into words. A gentle soul with the biggest heart and we are proud beyond measure"

Freddie's Mum - Lauren Truelove

5k Every Day in May for Dravet

Freddie receives medical treatment every four months, as well as weekly physiotherapy and speech therapy sessions. Despite these treatments, he still suffers from seizures and requires constant one-to-one care.

Freddie’s parents have a passion for skiing, which they have passed on to both Freddie and his sister, Daisy. Freddie has been learning to ski since he was three years old and most recently began using a sit-ski due to the challenges he faces with balance and coordination. He absolutely loves it, calling it his ‘Super Sledge’.

House of Bruar are committing to match customers donations up to £1000! Simply include (HOB) after your name when donating.

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 arm of the charity.

We would be extremely grateful and humbled for any support you are able to offer. Please remember to identify yourself as a donor from House of Bruar as we will match any donations made by customers up to £1000. Simply include (HOB) after your name.

If you're donating anonymously, please still include (HOB) in the name field, so that we can still match your donation.

5k Every Day in May for Dravet

Two years ago the team raised over £24,000. This year, we’re determined to beat that total!

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