UPDATE: 26th June 2024

We are delighted to share that, at time of writing, this fundraising team has raised an incredible £26,092. This is a truly phenomenal sum that will undoubtedly make a huge difference. On behalf of the team, and from all at the Society, thank you to all who donated.


We are happy to share the following message and request from Tom Truelove (2004), Tom Birkbeck (2004) and James Coughtrie (2004).

If you are able to in any way support their challenge, we know they would be incredibly grateful.

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Dear Fellow OL

We trust this message finds you all well and trust you don't mind us reaching out, but we wanted to appeal to the generosity of the OL community to support fellow OLs in an upcoming fundraising effort.

As you may be aware, six year old Freddie Truelove, son of Tom Truelove (2004), suffers from a neurological condition known as Dravet Syndrome. Dravet Syndrome is a severe, incredibly rare, and lifelong form of epilepsy which is characterised by frequent and prolonged seizures. Freddie was diagnosed with Dravet Syndrome in 2018, following three prolonged seizures at only six months old, lasting over an hour in duration. 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.

Whilst there is currently no cure for Dravet Syndrome, it is a very well researched genetic epilepsy, and we are forever moving closer to the elusive cure from gene therapy. However, research into a rare syndrome is often wildly underfunded, but as a community and with the help of 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.

So, to the point of our email: this year we have chosen to partake in the tough yet exciting challenge of "5k Everyday In May for Dravet". By running, cycling, or swimming 5km every day in May, we - Tom Truelove (2004), Tom Birkbeck (2004) and James Coughtrie (2004) - together with our wives Lauren, Katie and Lottie and a fantastic group of 30 friends and family, hope to raise as much as we can for Dravet Syndrome UK in the hope that one day, we will find a cure for Freddie, and all of the incredibly courageous children like him.

We would be extremely grateful and humbled for any support you are able to offer, via the link below (and please do identify yourself as an OL so we can personally thank you :)

5K Every Day In May For Dravet

Yours

Tom, Tom and James