Charity pledges to raise £50,000 for research into Motor Neurone Disease

We can announce that The Nick Smith Foundation is pledging to raise £50,000 in its first year for research into the condition.

Raising awareness of MND and improving the support available for those diagnosed and their families are two of the aims of our charity, which was formally launched at Shibden Park on Friday (29 June).

The launch event, attended by Nick’s wife Rachel – who is a Patron of the charity – and the Deputy Mayor and Mayoress of Calderdale, saw the charity’s Trustees outline more about their aims and ambitions and how they were going to achieve them.

Speaking at the launch – for the first time publicly since Nick died – Rachel said:

“I want to take this opportunity to send a very heartfelt thank you to all family, friends and others who have reached out to me and offered their support, words of comfort and love other the past six months, it has meant an awful lot to me, knowing you’re all there.

“I’m proud of this charity and proud it will have a lasting legacy for Nick. It’s a way of him still being a leader, still being extraordinary and still helping others out. Through the charity we want to remember Nick’s life and keep his spirit alive.”

Among the pledges was to raise £50,000 for the Sheffield Institute for Translational Neuroscience who are conducting pioneering work to find out more about MND and how to support those who are diagnosed. Two of the Institution’s researchers spoke at the launch.

The Institute’s founder is Professor Dame Pamela Shaw, who Nick saw shortly before his death:

“What happened to Nick illustrates why our work is so important and why the research teams in SITraN at the University of Sheffield are so determined to ensure that we do all we can to ensure that one day in the near future there is an effective treatment for MND and eventually, a cure.

“A heartfelt thank you to The Nick Smith Foundation for choosing to support SITraN and I can assure everyone who makes a donation to the Foundation that it will be used to make a real difference in the future to people and families faced with MND.”

Stephen Naylor, the charity’s Chair of Trustees, added:

“We need to know more and do more about Motor Neurone Disease – the cruellest of diseases which we still do not know enough about. The team in Sheffield are doing amazing work to change that and we are setting ourselves an ambitious target to support them in their work.

“We will need everyone’s help to raise the money but we know we can do it and we know how much difference it will make to helping smash the disease that took Nick from us.”

The charity’s other aims are to improve support on offer for children who suffer the death of a parent at a young age and encourage more young people to take up rugby league, a sport which Nick was passionate about having played and captained Siddal.

Nick had previously played for the Leeds Rhinos Academy alongside England and Great Britain international Kevin Sinfield who sent a video message for the launch. He said:

“I think it’s a fabulous charity and I support its aims. The passion of both Nick and myself for rugby has always been clear and to put something back into the sport will be an amazing legacy.”

Two rugby league ambassadors for the charity were also announced at the launch – Huddersfield Giants coach Chris Thorman and Giants Academy coach, and fellow Siddal legend, Luke Robinson. Luke said:

“Nick epitomised not only being a true gentleman but an exceptional captain and rugby player. I cannot think of a better way to honour his life and commitment to our club than a Foundation in his name.”

Doddie Weir, the Scottish rugby union legend who is living with MND after being diagnosed 18 months ago at the age of 46, also sent a message of support for the charity:

“When I first heard from Nick’s family, it really stopped me in my tracks. This devastating disease is indiscriminate and has such a terrible impact on the whole family – and Nick and Rachel’s story brought home to me just how important it is for us all to do what we can to help find a cure for MND.”

“I wish you all the very best with the Nick Smith Foundation – we are all working towards the same goals and with the combined energies of our supporters, we will continue to strive to make a difference.”

“Sport played a big part in Nick’s life and I have found the sporting community has come together in an amazing way to show its support for what we are trying to do. I have no doubt that the Nick Smith Foundation will make an important contribution to those affected by MND.”

Welcome to The Nick Smith Foundation

 

It was not long after Nick’s death that Rachel and I first discussed how we could remember the amazing man who was her husband and my wife’s brother. Nothing can take away the pain of losing him. Nothing can ever replace him. But we want to make a difference – in his memory, in his name.

How to achieve that was hard, knowing what to support was difficult. Nick was a man who meant so much to so many. He was an amazing father to two young children, a work colleague who could be depended upon day-in, day-out and a team mate who was every much a leader and warrior on the rugby field as he was a gentleman off it.

In deciding our objectives, we looked at the areas that influenced his life. Rugby league was a constant feature from a young age – at community level, at amateur level and at professional level. It seemed only fitting that one of our aims should revolve around that and encourage other young people who want to take it up and support the clubs who can deliver that.

Then there is the disease that took Nick from us – Motor Neurone Disease. The cruellest disease imaginable. It took just 101 days from Nick being diagnosed to him dying in hospital. A shockingly short amount of time, but enough time for us to understand there simply isn’t the research into MND to properly understand it – let alone treat it – nor the support available for those diagnosed, and their families, in the timeframe needed for what can be such a horrific, life-shortening condition.

Finally, there’s Nick’s lasting legacy. His children – Hadyn, who is five, and Georgia, who is now three. Nick’s death is incomprehensible to those of us who are adults, so how on earth are they meant to understand. They can’t, they shouldn’t have to. While we have been supporting them as much as we can, and I am personally so proud of them for how they are coping, it is important there is other support on offer for those children who lose a parent at a young age. It is one of the cruel coincidences – and there are so many cruelties in what has happened – that Nick and my wife Helen lost their own father when they were very young. He too was 38.

So, those are our three aims as a Charity:

  • We want there to be a better understanding of and support for those diagnosed with Motor Neurone Disease, and their families
  • We want there to be more support available for children who have to face the death of a parent at an early age – both for the children themselves and the surviving parent.
  • And, we want there always to be support and opportunities for people, especially young people, to get involved with community and amateur rugby league, in the same way that Nick did at the age of eight.

You can find more information about our aims and how we hope to achieve them through this website and we hope you will join us in supporting our activities.

Nick was much loved. He is much missed. He will be remembered, always.

Stephen Naylor
Chair of Trustees, The Nick Smith Foundation

Press Release: Ensuring a lasting legacy for Nick

Family, friends and colleagues of a 38-year old dad-of-two who died just months after being diagnosed with Motor Neurone Disease (MND) are launching a new charity in his name.

Nick Smith, from Halifax in West Yorkshire, died at Calderdale Royal Hospital on 20 December 2017, just 101 days after being diagnosed with the condition. His funeral in January was attended by over 700 people who wanted to pay their respects.

Nick was married with two young children, who were aged five and two when he died. He was a legend of amateur rugby league having played with Siddal ARLFC since the age of eight and captaining the senior side in some of its most successful seasons. He also played for the Leeds Rhinos Academy and Sheffield Eagles before embarking on a career as a management accountant.

The charity – The Nick Smith Foundation – has now been formed and registered with the Charity Commission. It will have three aims:

  • Supporting research into MND and looking at how we can improve support for those diagnosed and their families.
  • Supporting children who have had to face the death of a parent at a young age – as Nick and his sister faced aged 6 and 4, and now Nick’s children have to face aged 5 and 2.
  • Supporting amateur rugby league which played such a significant part in Nick’s life from childhood to adulthood.

The organisation will be led by Nick’s wife, Rachel, and brother-in-law Stephen Naylor, who will work alongside fellow Trustees from different parts of Nick’s life – Johnny Lawless, Ryan Jepson and Sharon Lowrie.

Rachel said:

“Nothing can take away the pain of Nick’s death and the weeks since he lost his short battle with Motor Neurone Disease have been the hardest imaginable.

“This cruel, cruel disease which we know too little about robbed me of my husband, my children of their daddy and our family and friends of an amazing man.

“I want to ensure his name lives on and this charity will work tirelessly to research and provide support for those diagnosed with MND and their families, help children who have to face the death of a parent at a young age and support amateur rugby league which was important to Nick.”

Stephen Naylor will be the Charity’s Chair of Trustees. Married to Nick’s sister Helen, he’s determined to ensure Nick’s legacy lives on:

“In his 38 years, Nick made a huge impact on many people’s lives. As Trustees, we pledge to ensure his legacy is that Nick continues to have a huge impact on people’s lives. We are determined to make a difference. In Nick’s memory and in Nick’s name.”

More details about the Charity can be found on the website at www.nicksmithfoundation.org.uk