Thank You for Your Support! - Dravet Syndrome UK

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June 4, 2026 3:08am EDT

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5KM EVERY DAY IN THE MONTH OF MAY

Over £26,000 Raised

Thank You!

Last month, Tom Birkbeck and a dedicated team of 36 friends and family embarked on a challenge to run, cycle or swim 5km every day throughout the month of May. This was done to raise money for a small charity called Dravet Syndrome UK, all in the name of Tom's nine-year-old godson Freddie Truelove.

In total, the team will surpass 5,000km collectively, with many participants going above and beyond the daily 5km challenge throughout the month.

Thank you so much to everyone who has donated! We are extremely grateful and humbled by all the support received. Across the 37 people (6 teams) taking part in the 5K-a-day challenge, an incredible £66,000 has been raised so far. Thanks to the generosity of our wonderful customers, we have contributed over £26,000 of that total – almost 40% of all funds raised for this fantastic cause.

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DRAVET SYNDROME UK

How Your Contributions Support Our Mission

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. It is estimated that there are around 2,000 people living with Dravet Syndrome in the UK, affecting 1 in 15,000 people.

DONATE HERE

Freddie's Story

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.

HOUSE OF BRUAR STAFF 5KM

It's All About Teamwork!

On Monday, Tom and several Bruar employees took part in a walk around the Bruar Falls to support Dravet Syndrome awareness and fundraising, enjoying the scenic route while contributing to a worthwhile cause.

"We were all inspired by Tom’s commitment to this challenge. Through creating the social media content, I’ve learned so much about Dravet Syndrome and Freddie’s story. The support around Lauren and Freddie from their team of 37 friends has been incredible to see."

- Marci Carruthers

A Final Thank you!

We want to say a huge thank you again to all of our lovely customers who have donated towards this incredible cause so far. Your kindness, generosity and support truly mean so much to us, and every single donation is helping to make a real difference.

We’re so grateful to be surrounded by such an amazing community that always comes together to support important causes like this. It’s heart-warming to see so many people getting involved and showing their support.

Two years ago, we raised just over £24,000 was raised for this cause. Thanks to the incredible support of our customers and community, we are delighted to have surpassed that total this year, raising more than ever before. We are truly grateful to everyone who has helped make this possible.

There is still time to donate if you haven't had a chance yet!

DONATE HERE