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