Charities We Support

We are proud to support 3 Fantastic Charities dedicating their research to Epilepsy. These are SUDEP Action, Yorkshire Brain Research Centre and Epilepsy Research UK.

SUDEP Action

SUDEP ActionSUDEP Action cares for the bereaved and works with families and professionals to make change.

When Lee died, SUDEP Action (previously known as Epilepsy Bereaved) provided a unique counselling service that helped us get through the darkest days of our lives.

Jane Hanna OBE formed the charity more than 20 years ago following the death of her partner to Sudden Unexpected Death in Epilepsy. She experienced the same emotions 20 years ago that we were going through when we lost Lee - overwhelming shock combined with the fact that we never knew that Epilepsy could kill.

SUDEP Action aims to put an end to epilepsy deaths. They do this through:

~ Collecting data on as many deaths as possible via the Epilepsy Deaths Register to give researchers material to study

~ Research into SUDEP and other epilepsy-related deaths

~ Raising awareness with people with epilepsy about how they can reduce their risk of dying

For more information visit

Yorkshire Brain Research Centre

Yorkshire Brain Research CentreThe Leeds Teaching Hospitals Charitable Foundation launched a new Brain Research Appeal in January to raise £2 million by 2015 towards a final total of £6 million in the longer term future.

The fundraising appeal will create a world-class Yorkshire Brain Research Centre to help tackle life limiting brain conditions, including Parkinson's disease, Epilepsy, Multiple Sclerosis and Dementia.

There are over 500,000 people in the UK who have epilepsy, and around 30% of these sufferers face debilitating seizures and other side effects due to a continued lack of control of their condition.

Lee's Smile is working closely with YBRC to improve the research facility at the Leeds General Infirmary as a lasting tribute to everything Lee achieved in his short lifetime.

For more information visit

Epilepsy Research UK

Epilepsy Research UKEpilepsy Research UK supports and promotes basic and clinical scientific research into the causes, treatments and prevention of Epilepsy.

It is the only charity in the UK that is exclusively dedicated to funding independent research into Epilepsy.

Epilepsy Research UK supports the work of scientists and clinicians throughout the UK, who are investigating all aspects of epilepsy in both adults and children. They are especially looking at what causes epilepsy, who is at risk of developing it, what goes on in the brain during a seizure, and safer drugs and better surgical techniques to treat it.

Through the generosity and support of hundreds of friends following Lee's death, the Lee Johnson Memorial Fund was set up with Epilepsy Research UK. We raised &30,000 in the first year, which was put into a pool and allocated to a specific research project. This gives us a real sense of knowing that our contribution is advancing research into Epilepsy.

For more information visit


Latest Fundraising Events

Memories of Lee

"Hi Becky , I haven't got a memory of your brother , but I lost my little brother 16 years ago - he was 27 and I was 5 months pregnant . People say time heals but it doesn't really it still feels like I've had my right arm cut off . If you'd like to talk I would like to get in touch "

Janet inskip

Read More Memories of Lee

Our Partners

We Support SUDEP in Action
We Support Yorkshire Brain Research Centre
We Support Epilepsy Research