Meet our fundraising stars and heroes!
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.
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.
Jack Cooke
Jack Cooke attempted the London – Edinburgh – London cycle ride in 2017. This is a gruelling event, a real test of mental & physical resilience. The total distance is 1500km to be completed in 125 hours! Jack singlehandedly raised over £3,000 for our charity, a true fundraising star!
Jack Cooke attempted the London – Edinburgh – London cycle ride in 2017. This is a gruelling event, a real test of mental & physical resilience. The total distance is 1500km to be completed in 125 hours! Jack singlehandedly raised over £3,000 for our charity, a true fundraising star!
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Jack Cooke
Jack Cooke attempted the London – Edinburgh – London cycle ride in 2017. This is a gruelling event, a real test of mental & physical resilience. The total distance is 1500km to be completed in 125 hours! Jack singlehandedly raised over £3,000 for our charity, a true fundraising star!
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Nick, Jonny, Dave, Richard and Matthew
” The team; Nick Gray, Jonny Smith, Dave Power, Matthew Austin and myself really enjoyed the challenge on a particularly cold, wet and muddy day. Lee is always close to our thoughts and certainly helped inspire us to take on the challenge and then get over the hurdles across those 12 miles. The charity continues to be a great source of pride to be associated with and something I will always support. “
Richard and his amazing team raised over £1200 for our charity! We can’t thank them enough.
Nichola Johnston's Story
“I am writing to share my personal experience regarding the technology advancement, care and equipment used that changed my life for the better”
To give you some background, my name is Nichola Johnston, aged 39 living in Leeds. I was diagnosed with epilepsy in 2004 with the root cause being a Cavernoma in my right temporal lobe. I had seen many specialists in and around Leeds, mostly as a private patient until I received life changing care from the NHS Neurology Department.
I had exhausted all avenues trying various medications so the last resort was to explore having surgery. Obviously, before you have the surgery the necessary tests needed to be done to ensure it was the correct treatment for me and to reduce the risk my surgeon Mr Sivakumar went through the approach and what to expect. At first, I had to have the Video Telemetry test at the Lee Johnson Suite to ensure that the surgery was the right thing for me and that it would provide the necessary investigation and results for next steps.
I was nervous at first and kept thinking how bored I was going to be with having to sit in a hospital bed for 5 days. But with the care I received and the results it has given, boredom was a walk in the park.
That’s something I’ll never forget for all the right reasons. For the first time in my life I wanted to have a seizure so it could help with investigations and further treatment.
Luckily for me I had 2!!! When I heard that the test confirmed where the seizures were triggered from, it was such a relief and provided more comfort as I had concrete evidence that the surgery was exactly what I needed. Without this evidence I’m not sure that I would have had the surgery.
I had brain surgery on the 16th January 2017. At the time of writing I am 504 days seizure free and counting (yes, I still tick off every day I’m free on a calendar). This could not have happened without your professionalism, knowledge and technical equipment being made available on the NHS. I am now back exercising and able to drive, but most importantly I can live my life without having to always think that I could have a seizure at any time.
This was the best decision I have ever made and I owe it to Medical Advancement and how important it is to ensure you are 100% confident of what is going on in people’s brains!
Thank you, thank technology, thank funding, it proves that the NHS goes the extra mile to change people’s lives. I will always have your backs!
All my love
Nichola Johnston
The Manchester 10K
At Lee’s funeral, attended by over 500 mourners, Lee’s Dad Simon made a commitment to all those present that he was determined that Lee’s tragic premature death at the age of 24 should not be in vain. Knowledge of SUDEP (Sudden Unexpected Death in Epilepsy) was minimal, although the stigma surrounding Epilepsy was immense. Simon, Vicky & Becky committed to commence a fundraising campaign with the aim of raising funds for research into Epilepsy, raising awareness of the condition & reducing the stigma surrounding it.
Entry into the Manchester 10k in May 2011 was the start of what has become a life changing journey.
After Lee graduated in 2007, he moved to Manchester where he shared a house with a colleague from Kitbag, Dan, and one of Dan’s close friends Jonny. Manchester became Lee’s 2nd home (always a challenge given his fanatical support of Leeds United!), and it was Dan who suggested that we should enter the Manchester 10k in Lee’s memory. The response from family & friends was amazing, not just to compete in the event but to raise as much money as possible for Epilepsy Research UK.
A team of 30 runners (family, friends & colleagues from Kitbag) participated & over £20,000 was raised from this one event.
The event is firmly established in our calendar, and it’s as much about remembering all the good times we had with Lee as it is raising funds for the charity.
This year’s Manchester 10k takes place on May 22nd, and entry can be obtained by visiting https://www.greatrun.org/events/great-manchester-run
Gemma Brown's Story
Gemma first contacted us in 2013 having seen an article about our charity in a local magazine. She was very emotional, essentially reaching out to us to see if we could help her in any way following a series of seizures which weren’t being controlled by her medication.
Epilepsy was having a massive effect on her life, the stigma surrounding the condition affected her personal relationships and she wasn’t able to drive due to the frequencies of her seizures.
We met up with Gemma, and put her in touch with a Neurology Consultant in Leeds who specializes in Epilepsy, Melissa Maguire.
Following a long wait, Gemma was monitored for a week at the LGI using the existing video telemetry equipment and the area of her brain that was causing her seizures was identified.
She is now seizure free, and has regular check- ups at the LGI with the specialist Epilepsy nurses employed by NHS. The increased nursing facility, together with the state-of-the art video telemetry equipment at the Lee Johnson Suite has given patients like Gemma a real chance to lead a “normal” life – living proof that our fundraising is changing people’s lives.
Gemma has supported Lee’s Smile in several ways, and her most recent fundraising effort was to compete in the Leeds Triathlon – raising thousands of pounds for a cause that’s very close to her heart.
We can’t thank you enough Gemma, you really are a Star!!!
Lynda Johnson, Paul Johnson and Sarah Fox
Lee’s Aunty Lynda, Uncle Paul & cousin Sarah wanted to fundraise in his memory by attempting the Yorkshire Three Peaks Challenge in July 2011.
Our intrepid hikers set off in reasonable conditions on the 16th July, only to encounter some of the worst weather imaginable whilst attempting the 24 mile hike, which included 5,200 ft of ascent!
The camera doesn’t lie, and the pictures below illustrate just how difficult it was – fog, rain & wind all contributing to a glorious summer’s day in the Yorkshire Dales!
Health & Safety concerns meant that Lynda & Sarah weren’t allowed to complete the challenge, but Paul made it in 13 hours and I quote “the hardest thing I’ve ever attempted!”
Between them, over £2,000 was raised for our charity, certainly something they’ll never forget and an amount we’re eternally grateful for.
Undoubtedly fundraising stars!
Shelley Wilson and Brenda Wilson
Lee’s aunty Brenda and cousin Shelley have really gone the extra mile to raise funds in his memory.
Shelley’s children Lee, Jamie & Ella held a week-long charity event at Widney School in October 2011. Every year the school ask 3 charities to present their case at assembly. Jamie & Ella talked about Lee to the whole school and then the children voted throughout the day which resulted in a landslide victory for Lee’s Smile! During charity week, the school did all kinds of things like non-uniform day, a bake sale, etc., and £2175 was raised.
Separately Shelley, and by her own admission she is not a runner, completed the Shakespeare Half Marathon in April 2012 and raised over £1,000.
To complete the Wilson effort, Brenda has hosted 2 coffee mornings and raised £1300 in Lee’s memory.
These are all amazing fundraisers for Lee’s Smile – thank you!!
More Fundraising Highlights 2015 onwards
Between 2011 and 2014, over £100,000 has been raised by family & friends in Lee’s memory. There’s no doubt that this amazing support has helped Simon, Vicky & Becky to get through the darkest of days following Lee’s premature death. We’re continually receiving donations in Lee’s memory, and we want to mention the following fundraising stars who arranged special events from 2015 up to our last SWTS Ball in 2018.
2015
£1100 raised at the Windmill Beer Festival – cheers all round!!
£1000 raised from raffles held by Sant’ Angelo’s restaurant in Wetherby
£1200 raised by Asda HQ during a VIP event at the Salem in Leeds
£300 raised by the Scott’s Arms in Sicklinghall at their Xmas Gift Fair
£630 raised by Brenda Wilson at her coffee morning in Solihull
2016
£275 raised by the Rotary Club of Leeds at one of their Breakfast Meetings
£250 raised by Ross Fiddes at the Manchester 10k
£400 raised at the Windmill Beer Festival
2017
£700 donated by the Corkhill family in memory of Jane Corkhill
2018
£234 raised by Alyson Watson at a Culture Cookery Day at Ralph Thoresby School
£600 raised by Caroline Tuddenham at the Liverpool Half Marathon