Annual Report 2018/2019

Every year, as a registered charity, we have to produce and publish an Annual Report and Financial Statements to show how we ran the Foundation and how we spent the money you generously raised and donated.

This Annual Report has now been completed, the accounts prepared and independently examined and the documents submitted to the Charity Commission.

We believe the Report shows that we’re making a difference in Nick’s memory and Nick’s name, and that’s all down to you and your support for Smudger.

You can read the full Annual Report here – and we have prepared an infographic summarising what we did in year one (May 2018-April 2019) which you can see here.

Thank you for your support.

Community Spirit Awards

We are thrilled to have been shortlisted in three categories at the Community Spirit Awards from the Community Foundation for Calderdale.

We are shortlisted for:

Charity of the Year

Best New Charity Award
– Full shortlist: Calderdale Lighthouse, Luddendenfoot Community Centre, Nick Smith Foundation & Slow the Flow Calderdale

Best Marketing Award
– Full shortlist: The Nick Smith Foundation, Overgate & Orange Box

The awards ceremony takes place on 21st November. The fact we’re shortlisted is thanks to you and everyone who’s worked hard #ForSmudger since we formed the charity 18 months ago.

Thank you.

 

Young West Yorkshire rugby league players come together for the Smudger U7s

Over 100 young rugby league players from across West Yorkshire came together on Sunday (1 September) for the annual Smudger U7s tournament.

The event, which took place at Siddal ARLFC, is held in memory of club legend Nick ‘Smudger’ Smith who died from Motor Neurone Disease in December 2017. It is organised by the charity set up in his name, The Nick Smith Foundation, along with the amateur club.

This is the second time the tournament has been held and this year there were more teams, more children and more families at the fun day than ever before.

Amateur rugby league clubs from Siddal, Elland, Greetland, Emley, West Bowling, Kippax and Bramley attended and took part in 22 games on 11 mini-pitches. Every child taking part received a rugby ball and Smudger’s Top Tips sheet.

One of the charity’s main aims is to promote the sport Nick loved, rugby league, to young people to encourage them to take up and develop their skills. The Smudger U7s is a key part of that work and is supported by local businesses, including main sponsor SBS, and professional clubs.

Stephen Naylor, Chair of the Nick Smith Foundation, said:

“Nick loved playing and coaching rugby league and I know he would be so proud of this event, bearing his name, that brings together so many young people from across West Yorkshire to learn, play and have fun.

“Thank you to everyone at Siddal for their continued support in hosting and organising this event, the professional clubs and sponsors for backing it and all the rugby league clubs for travelling to Halifax to take part.”

The Nanostring Ncounter – Your support making a difference in the fight against MND

One of our priorities has always been to ensure you know where the money donated or fundraised for The Nick Smith Foundation is spent – and the impact it has. 

We made a substantial £50,000 donation to the Sheffield Institute for Translational Neuroscience (SITraN) earlier this year and it went towards a machine called a Nanostring Ncounter – a key piece of equipment helping the fight against Motor Neurone Disease.

We’re pleased to be able to say in its first few months of operation it is already having an impact:

  • Over 200 samples have been interrogated using the machine looking at the levels of between 70 and 800 genes in each sample
  • These are part of seven independent projects
  • Three of these are MND-specific and the others are related to dementia and oncology, giving added value from the machine and enhancing learning across the centre

Dr Adrian Higginbottom, Senior Experimental Officer at SITraN, has written about its impact in detail:

The value obtained in the short time we have had, and been trained on, the Nanostring is clear; it has been used in 7 independent projects, 3 are motor neuron disease (MND) specific, 2 are dementia related and the other 2 were from the wider school and are related to oncology. Over 200 samples will have been interrogated, ranging between 70 and 800 gene targets, depending on the project being undertaken.

The Motor neuron specific projects were the driving reason behind sourcing the Nanostring in SITraN. The other projects have added value as we have not exceeded capacity, and will help with funding future maintenance of the machine.

Specifically, we are involved in 2 ongoing clinical studies for MND centred on understanding the benefits of low dose IL2, called IMODALS and MIROCALS. The reason is, evidence suggests inflammation has a role to play in MND, specifically a key role for regulatory T cells (Tregs) has been demonstrated, crucial in modulating normal neuroinflammatory responses. For MND patients, it has been shown Tregs are dramatically and progressively decreased in number with disease progression, suggesting immune responses will be sustained for longer in the central nervous system. Interleukin 2 (IL2) used at low dose has been shown to promote the selective increase in Tregs.

MIROCALS (http://www.mirocals.eu/en/) is a proof of concept phase II clinical trial, testing the validity of modulating Tregs using IL2 in MND and its safety. IMODALS is a pilot phase II clinical trial defining the activity and safety of a range a doses for subsequent use of the best dose in a phase II/III trial, again administering low dose IL2. The Nanostring has been pivotal in analysing the biosamples collected in these trials, studying the efficacy of the treatment, measuring the transcriptomic changes (gene signature) using the “Autoimmune Discovery” panel across treatment time. This off the shelf panel interrogates 755 genes simultaneously.

The major advantage is the time it would have taken to validate this many targets on this many samples in a conventional quantitative polymerase chain reaction (qPCR) type analysis is immense, months of wet bench work has been reduced to hours. Another advantage is the number of targets that can be investigated on a limited amount of our precious samples.

As yet none of the data generated on the Nanostring has been published, but several manuscripts are being drafted currently for submission in the near future.

 

Charity team raises £7,000 at Leeds 10K

A team of 40 runners took to the streets on Sunday (7 July) taking part in the Leeds 10K for The Nick Smith Foundation, collectively raising over £7,000.

The team was made up of people with a wide variety of connections to Nick ‘Smudger’ Smith, from Halifax, who died in December 2017 from Motor Neurone Disease aged 38.

They included his wife Rachel and her sister Julia, Nick’s cousin Jack and a group of his friends, 11 workers from Brighouse’s HLC Nursery – where Nick’s daughter and nephew go, parents from the Nursery and friends and colleagues of Nick and Rachel.

As well as Sunday’s main event, four-year old Abigail, who goes to HLC Nursery, took part in the Leeds Mini Run on Saturday. She wanted to run the 1.5km in memory of her friend’s daddy and raised a brilliant £150.

The registered charity has three aims – to support children who have to face the death of a parent at a young age, research into Motor Neurone Disease and rugby league, the sport which Nick played and was passionate about.

Stephen Naylor, Chair of the Nick Smith Foundation, said:

“Having so many runners taking to the streets of Leeds and raising so much money in Nick’s name is incredible. Thank you to every single member of the team who ran for Smudger and everyone who supported them.”

Countdown to the Leeds 10K

There’s not long now until the Leeds 10K on Sunday, 7 July, and our Nick Smith Foundation team of dozens of runners is nearly complete.

Thank you to everyone who is taking part – if you can, please support our team. Here are the fundraising pages set up so far by our amazing runners:

We also have a Team page which you can donate to if you’d like to support everyone running #ForSmudger. You can donate here >>

Support our Team

As well as donating, you can support our team in person on the day at the dedicated Nick Smith Foundation Cheer Station. Details of where this is are here >>

Tesco Bags of Help – Thank You

We’re delighted to say we have been awarded £2,000 from Tesco’s Bags of Help Initiative for our ‘Living With’ Memory Box Project.

You voted for us in store at the Tesco Superstore in Brighouse and in Express stores in parts of Huddersfield during March and April.

As a result of your votes and the award from Tesco, we will be able to help achieve one of our three aims – to support children who have had to face the death of a parent at a young age, the tragedy which Nick’s children Hadyn, aged 6, and Georgia, aged 4, are having to live with.

Stephen Naylor, Chair of the Nick Smith Foundation, said:

“Every penny counts for a small charity such as The Nick Smith Foundation and the £2,000 from Tesco Bags of Help will make a real difference. Thank you to everyone who chose to support us.

“Our ‘Living With’ Memory Box Project aims to support children who are having to face the worst possible situation – the death of a parent at a young age. Nothing can ever take away the pain, but we hope our work can support them through some of the darkest days imaginable.”

Charities come together to support children facing the death of a parent create lasting memories

We’re aiming to improve the support available for families who face the same awful situation that Nick’s family have gone through in the past two years.

The Foundation is working with the Motor Neurone Disease Association to develop a ‘Living With’ Box which can be used to make and store memories for those who are diagnosed with any terminal illness.

The two organisations hosted a workshop on Saturday (11 May) during the Pushing Up Daisies festival in Todmorden aimed at sharing ideas for the personal pre-bereavement resource for children and families.

Called ‘What was Daddy’s Favourite Ice Cream’, a question asked by Nick’s children (aged 4 and 6) after his death, it focused on how best to remember the little things, questions which only a parent would know the answer to, and which their children would like to know in the future.

Stephen Naylor, Chair of the Nick Smith Foundation, said:

“When Nick died at the age of 38, his two children Hadyn and Georgia were left without a father. The impact of that is felt every day but they want to remember their daddy, and we want to ensure others facing the same tragedy get more support to capture and store memories for the future.

“The ‘Living With’ Boxes aim to help children who are facing the death of a parent by creating lasting memories pre-bereavement and providing the resources to record these together. At a time when it can be hard to know where to turn for help, we hope the Box will give ideas to capture thoughts and moments which mean when someone you love is no longer living, you’re still living with them.”

The workshop ended with those taking part being given vouchers from The Piece Hall’s ice cream parlour Blondin’s so they could discover what each other’s favourite ice cream flavour was.

Laura Willix, Children and Young People’s Service Development Manager at the MND Association, added:

“This session was a great opportunity for children, young people and families affected by MND, to come together to create personalised memories that will hopefully increase their emotional resilience and wellbeing, when faced with a diagnosis, and the impact this has.

“We hope that families will have had an opportunity to begin discussions about the benefits of memory making and have started to record some of the really important ‘little things’!”

You can find out more about the Pushing Up Daisies event here

Nearly 200 come together for an afternoon of steam train fun for Smudger

Almost 200 people came together for an afternoon of steam trains, treats and family fun at Brighouse’s Ravensprings Park on Saturday (4 May).

The event was hosted by The Nick Smith Foundation to raise money for the charity set up in memory of 38-year old Nick ‘Smudger’ Smith, who died from Motor Neurone Disease in December 2017.

Nick and his son Hadyn, now aged six, regularly attended the monthly open days and loved riding on the miniature steam trains of the Brighouse and Halifax Model Engineers.

The event was supported by volunteers from Barclays and the Fixby and Brighouse Women’s Institute who baked a selection of amazing cakes and biscuits which were sold to raise money in support of the charity’s aims.

See the full gallery on Facebook >>