Together...

we can keep Lee's memory alive & make a real difference

We're determined to succeed

Together with our fundraising stars and heroes, we’ve kept Lee’s memory alive. The charity works consistently to fund research into this terrible, incurable condition. We’ve also funded video telemetry equipment at the Lee Johnson Suite at the LGI, which helps to pinpoint areas of the brain where seizures occur, allowing clinicians to prescribe the next course of action to stop the seizures – potentially saving loss of life.

£ 0 K+
Funds Raised

We're determined to succeed

£ 0 K+
Funds Raised

Together with our fundraising stars and heroes, we’ve kept Lee’s memory alive. The charity works consistently to fund research into this terrible, incurable condition. We’ve also funded video telemetry equipment at the Lee Johnson Suite at the LGI, which helps to pinpoint areas of the brain where seizures occur, allowing clinicians to prescribe the next course of action to stop the seizures – potentially saving loss of life.

Our Mission

There is no greater pain than to lose a child. Our memories of Lee can never be taken away from us, but every death from SUDEP that we can prevent means his death has not been entirely in vain.

We will continue to raise funds to support research into the causes of Epilepsy, we will continue to raise awareness of Epilepsy and we will never stop in our mission to erase the stigma that still surrounds this terrible condition.

On December 12th December, Lee went to bed a fit, healthy & happy, 24 year old man. On the previous afternoon, he had successfully undergone a soccer training assessment course which was to be the start of the next stage of his life – as a soccer coach on the West coast of America.

Tragically he never woke up – Lee was another victim of SUDEP, Sudden Unexpected Death in Epilepsy.

Lee developed a mild case of Epilepsy at the age of 9, and the medication he took controlled his condition well – he experienced occasional nocturnal seizures, and led a normal, healthy life.

He knew the 3 most common situations that could trigger a seizure were excess alcohol, sleep deprivation and stress – he adapted his lifestyle to ensure the chances of these 3 situations arising were minimal.

Neither Lee, his parents Simon and Vicky or his sister Becky knew that Epilepsy could take a life, and following Lee’s premature passing, a campaign to raise awareness of Epilepsy and reduce the stigma surrounding the condition was launched.

This campaign soon developed into the creation of Lee’s Smile – a lasting tribute to Lee’s achievements in his short lifetime, and a charity that aims to use research and awareness to get the answers that will save lives. 

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What we do

We have a very powerful and personal experience to communicate. We don't expect anyone to understand the effect our tragedy has had on us, but we have been given the strength from Lee to ensure his memory lives on through the work of the charity.

We Fund

We are in search of opportunities to help as many people as possible. We raise funds for research into the causes of epilepsy, and medical research to find a cure.

We Educate

We work hard to reduce the stigma surrounding epilepsy and to raise awareness of this awful condition.

We Inspire

In the face of adversity, we choose positivity. We are determined to succeed and to inspire others along the way.

Our Annual Ladies Luncheon!

On the 20th May 2022 we will be holding this year’s Ladies Luncheon! The event will take place during National Epilepsy Week (15th May – 21st May) and this time we are lucky enough to be welcoming our guest speaker Tricia Stewart, one of the original “Calendar Girls”.

The event is now sold out but keep an eye on our events page for photos, updates and information regarding future events!

"The charities Lee's family support provide information and advice about risk, exceptional clinical care, and investment into research that will prevent epilepsy-related deaths. We are enormously grateful for your support. Thank you."
Maxine Smeaton, Chief Executive, Epilepsy Research UK
"Thank you for all you do, for sharing your personal experience, and keeping Lee’s memory alive. Lee’s Smile charity funds such vital prevention and research to help save lives."
Jane Hanna CEO SUDEP Action
Our Partners