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2023-03-31-accounts

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STAND AGAINST MND ANNUAL RETURN FINANCIAL YEAR ENDING 31 MARCH 2023

Stand Against MND was formed in January 2020 by Sam Perkins following his diagnosis of motor neurone disease (MND) in March 2019. The purpose of the charity is two-fold: (1) to raise funds and awareness to support research into a cure for MND and (2) to provide funds to palliative care services that assist those who are affected by MND, including those diagnosed with MND, but also their family and friends.

The charity continues to achieve its objectives through a range of fundraising activities and promotional events including: auctioning fantastic prizes like a bespoke firepit, local choirs singing against MND and all of our fantastic TEAM SAM supporters hiking hills, running miles and biking challenges!

A message from our founder, Sam Perkins:

“Being diagnosed with MND at the age of 37 was devastating. The offers of help and support which flooded in from family and friends as they shared in my shock gave me a great deal of comfort. With support from my wife Emma, we decided to harness that goodwill and attempt to make a difference for the MND community and the future prospects for treatments for the disease.

I am delighted that the venture we started has continued to grow and flourish. As we continue to succeed and our fund raising accelerates I find myself increasingly motivated to do more, from a personal perspective this helps immeasurably in my private Stand Against MND.

This year was incredibly special for me as it saw me complete ‘One More Tri’ at the Outlaw Half in May. An opportunity I thought had passed me

by as a result of the COVID pandemic. To take on such a personal challenge surrounded by an incredible number of people who have helped me so much over the years, made it one of the best and most emotional days of my life.

The concept of ‘TEAM SAM’ became visible that day. As we look forward to an exciting future for Stand Against MND, it’s only right to acknowledge that TEAM SAM is there to push and support me in every day of this journey. The Charity would not be what it is without them.

There are too many to thank here individually, but special thanks must be made to Emma, my family, the trustees, our patron Jonny, my carers and a special mention to Sue who agreed to help me with the unenviable task of keeping me on top of my admin this year.

Thanks to all for joining me in the Stand Against MND.”

Stand Against MND is a charitable incorporated organisation

Registration Number: 1187436 Registered Address:12 Leveret Way, East Leake, Loughborough, Leicestershire, LE12 6XX info@standagainstmnd.com

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Our Year in Review:
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Fundraising
-
Awareness
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Donations
Section 1
What’s next?
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Fundraising
-
Awareness
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Donations
Section 2
Trustee Report
Section 3
Accounts
Section 4

1. OUR YEAR IN REVIEW Fundraising[1]

We have set out our flagship fundraising challenge and partnership below to give a flavour of how we raise funds to support research into a cure for MND and services offering palliative care to those diagnosed with the disease.

In addition to those key activities, we have had supporters undertake their own personal and team challenges ranging from team triathlons, spin challenges, litter picks, charity quizzes, climbing mountains, taking on “dragons” and so much more! We can’t thank our supporters enough for joining us in our Stand Against MND.

One More Tri

SAM’s flagship challenge was for our founder Sam to complete one more triathlon.

This was achieved with the support of a twenty-strong team of athletes and support staff, Sam crossed the Nottingham Outlaw Half Triathlon with the whole team and his friends and family.

1 The charity raises funds from the public without engaging with professional fundraisers. The charity worked informally, without the need for a formal written agreement, with a small number of commercial organisations in the FYE 31 March 2023 including, HDI Global, HUUB Design, and Delichon Limited. The charity did not receive income from contracts with central government or local authorities or from outside the United Kingdom.

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The event raised over £13,000 and generated significant awareness of motor neurone disease and the charity.

Various media outlets reported on the events, including BBC East Midlands Today, ITV Central, BBC Radio Nottingham, the Mirror online, Talk Sport, 220 Triathlon Magazine and across all of the charity’s social channels. HUUB Design produced three short stories capturing both the run up and the day of the event.

The HUUB videos are available to watch on the links below.

Episode 1: The Door Slammed Shut Episode 2: Race Day Nerves Episode 3: What A Day

Friends, family and celebrities including Jonny Owen and Vicky McClure, Kevin Sinfield OBE, Chrissie Wellington OBE, Stuart Broad, Alexander Sims and a myriad of professional triathletes sent video messages in support of Sam’s One More Tri challenge.

A huge thank you to all of Team Sam: Steph Cobb (swimmer towing 100kg boat), Nick Rawling (cyclist), Glenn Clark, Greg Mitchell, Richard Carey (run team 1), Jason Lee, Simon Fotheringham, Jack Hobbs, (run team 2), Anna Critchley, Matt Julier, Professor Steve Haake OBE (run team 3), Una Lacey, Dave Manning-Ohren, Tim Heming (run team 4) Victoria Stonehouse, Rebecca Clark, Emma Perkins (run team 5), Alan Perkins, Alex Gwyn Davies (cyclist support) and Tom Rawling (run support), along with carers Maria and Marcy who assisted Sam throughout the day.

Of course our biggest thank you is for Sam Perkins for his brave and unrelenting attitude and outlook in the face of such adversity, to coordinate and participate in this event personally is truly inspirational.

Special thanks to the Outlaw organisers for ensuring Team SAM and Sam himself were well looked-after throughout the event, HUUB Design for providing the

stunning team shirts and beautiful videos and photos capturing the day and Delichon Limited for providing a fully modified race chair for Sam. Without the support of these organisations, friends and family making Sam’s wish to cross a triathlon finish line one more time would not have been possible.

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HDI Global

SAM is proud to be the charity partner of HDI Global in 2022.

Throughout the duration of the partnership, HDI have raised over £4,500 through Chinese New Year competitions, Spooktacular Bake Sales, bike rides, triathlon challenges and have supported our own Christmas raffle by donating one of our big ticket prizes.

In Summer 2022, Sam was welcomed to the HDI offices in London to meet some of the staff driving fundraising activities and to tell them a little about the difference their money will make to the lives of those diagnosed with MND.

We are grateful for the time, effort and dedication of the staff at HDI.

Rushcliffe Golf Club

The Rushcliffe Golf Club ladies selected Stand Against MND as their chosen charity for 2022 and held various fund raising events over the course of the year.

The highest profile event was the Annual Charity Golf Day which saw a packed field compete to win the day.

Sam attended the event during the afternoon seeing competitors, including his dad, head off from the first tee. Sam then returned during the evening and gave a speech, thanking everyone for their support.

Over the year the ladies raised over £5,000 and we are extremely grateful for their continued enthusiasm for raising funds and awareness for the Charity.

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Awareness

Commonwealth Baton Bearer

Sam was nominated to bear the Queen’s Commonwealth Baton on the first leg of its tour in Derby City centre. Sam was pushed in his Outlaw race chair by his cousin, Ben Neath, who had nominated Sam for the role.

Ben said:

“As soon as I saw that the nomination process for being a Baton Bearer had opened I knew that Sam was a perfect fit. I wanted to nominate him as a way of not only recognising his achievements with Stand Against MND but also his unwavering positivity that has inspired others to challenge themselves, but also to say thank you for everything he has done for me personally.

I'm also incredibly grateful to be asked to push Sam along his leg of the relay, it'll be a really proud moment for me and it will be very special to share that with Sam.”

Pride of Rushcliffe winner

We were thrilled to have our founder, Sam Perkins, be nominated for and win the Pride of Rushcliffe Award.

The Award’s celebrate Rushcliffe’s volunteers, businesses, organisations, environmentalists and the best of its health and wellbeing, sport and food and drink sectors.

Sam received the Pride of Rushcliffe Award for founding the charity Stand Against MND.

Leader of Rushcliffe Borough Council Cllr Simon Robinson said:

“Sam’s story is an exceptional example of the incredible spirit an individual can show in the light of such adversity and he is an inspiration to us all. As his nominator stated, he is a well-loved person in the community and the definition of a person that makes you proud to live in Rushcliffe through all his work and positivity and I couldn’t agree more.”

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Parliamentary Visit

Sam was invited to meet with his local MP, Ruth Edwards, at the Houses of Parliament to discuss his experience of MND and how Ruth and her colleagues can advocate for MND warriors in Parliament.

Sam also attended the public gallery to watch Prime Minister Rishi Sunak’s inaugural Prime Minister’s Questions and met with the Speaker of the House, the Rt Hon Sir Lindsay Hoyle, to discuss improvements to accessibility at the Houses of Parliament.

The charity will continue to work with Ruth and her team to advocate for matters that impact the MND community.

The University of Nottingham Visit

On 21 June 2022, Global MND Awareness Day, Sam was delighted to mark the occasion by visiting MND researchers at the University of Nottingham, and presenting a donation cheque for £20,000.

This money will be dedicated by the MND Association towards funding projects which advance the discovery of treatments and cures for MND.

As part of his visit, Sam was given a tour of the laboratory facilities used by the MND research team. He was also able to discuss progress made by one of the projects funded by Stand Against MND with the lead researcher.

Sam said:

“It is fantastic to see where some of the research we fund takes place, and to meet Professor Layfield and his team. They are the ones at the coalface every day trying to help people like me.

Hearing about the work they do and how Stand Against MND funding has made a difference brings a sense of pride and strengthens my determination to do more.”

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Nottingham Forest Football Club

At the beginning of January, Sam wrote a letter to Nottingham Forest manager Steve Cooper to thank him for all of the teams recent success. In light of his MND diagnosis, Sam hadn’t expected to see such a period of improvement.

To his great delight Steve Cooper phoned Sam the following day to tell him how inspirational he had found the letter.

The BBC contacted Sam as they wanted to feature his story at the following game against Leicester City. Sam did not know that the BBC had arranged for him to meet Steve after the game, and the meeting was

even happier after a Brennan Johnson brace saw Forest win the game 2-0.

Of the surprise meet and greet with Steve, Sam said: “I’ve been fortunate enough to have some pretty special days since my MND diagnosis almost 4 years ago. Yesterday however, was one of the best.”

Since then, Sam has formed a solid relationship with Steve and the team at Nottingham Forest which has generated greater awareness of the Charity and MND through additional reports from the BBC and participation from the Nottingham Forest players in Charity promotions.

Points of Light Award Winner

On 22 March 2023, we were overwhelmed to learn that Sam had been awarded a Points of Light Award by the Prime Minister, Rishi Sunak.

Points of Light awards are given to individuals who have made an exceptional contribution to their region or community. The Prime Minister said:

“I want to thank you for all you are doing to help people like yourself who have been diagnosed with Motor Neurone Disease. I was amazed to hear how you completed last year’s Outlaw Half Triathlon while in a wheelchair and on a ventilator. Your strength and

determination are truly inspiring. Through your fantastic fundraising and your charity, Stand Against MND, you are helping to progress vital research. I share your hope and belief that one day we will find a cure for this awful disease.”

Sam has been invited to the Houses of Parliament to meet the Prime Minister and receive his Award.

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Donations

The Charity is thrilled to have made the following donations totalling £105,100.00 in FYE 31 March 2023:

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2. WHAT’S NEXT?

Fundraising

In February 2023, Sam announced he would be one of only a few assisted wheelchair users to participate in the 2023 London Marathon on 23 April and would be pushed by one of his all-time sporting heroes, Chrissie Wellington OBE alongside a support team of carers, friends and family. Sam appeared on talkSPORT with Jonny Owen, BBC News and BBC East Midlands to talk more

about the challenge. Fundraising began at the end of this financial year with the event due to take place at the start of our next financial year (ending 31 March 2024).

Sam will also establish a broader campaign to encourage and motivate individual and group fundraisers outside the Charity-led challenges.

Awareness

Sam will continue to develop key existing relationships with the aims of:

Donations

The Charity will maintain its focus on donating the majority of funds raised towards research projects seeking to advance progress to find a cure for MND with remaining funds donated to palliative care providers that support people with MND and their families.

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3. TRUSTEE REPORT

Finances

The charity's financial period runs from 1 April to 31 March.

At the start of the financial year ending 31 March 2023 the charity carried over £52,903.28

Income for the financial year ending 31 March 2023 was £76,462.89 Expenses for the financial year ending 31 March 2023 was £5,450.05 Donations for the financial year ending 31 March 2023 was £105,100.00

This meant at the end of the financial year the Charity held £18,916, which is still more than the charity's constitution originally intended. The reason for this is that the Charity raised £13,704 in the last month of the financial year.

Going forward the Charity is going to examine how much money it should be holding at any one time due to the significant amount of money we are now raising.

The charity trustees received no remuneration for the work they did as trustees.

The Trustees declare that there have been no serious incidents and, as such, no serious incidents have been reported to the Charity Commission.

Trustee payments

Through the business, Aloha Creative Limited, Rebecca Clark (trustee and director of Aloha Creative Limited) received payment for graphic design, merchandise and printing services provided to the charity.

Paragraph references in the tables below are to SORP FRS 102.

Charity name Stand Against MND
Other name the charity uses SAM
Registered charity number 1187436
Charity’s principal address 12 Leveret Way, East Leake, Loughborough,
Leicestershire, LE12 6XX

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Trustee name Office (if any) Dates acted if
not for whole
year		 Name of person (or
body) entitled to
appoint trustee (if
any)
Alan Samuel Perkins Founder and Chair N/A N/A
Emma Reid Secretary N/A N/A
Alastair John Hall Treasurer N/A N/A
Rebecca Clark N/A N/A N/A
Victoria Clare Alvis N/A N/A N/A
Greg William Mitchell N/A N/A N/A
Richard Carey N/A N/A N/A
Summary of the purposes
of the charity as set out in
its governing document
Para 1.17 The purpose of the charity is:
1) the promotion and funding of research
into the nature, causes, diagnosis,
prevention, treatment and cure of
motor neurone disease and the
publication of the results of such
research; and
2) the provision of support, assistance
and information to people affected
(directly or indirectly) by motor
neurone disease through clinical,
hospice or other forms of palliative
care.

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Summary of the main
activities in relation to
those purposes for the
public benefit, in
particular, the activities,
projects or services
identified in the accounts.		 Para 1.17 and
1.19		 The charity has undertaken a range of
activities to raise funds and awareness
in line with its purpose.
In particular, fundraising activities have
included: the One More Tri challenge as
well as various individuals undertaking
their own personal challenges whist
raising funds for SAM.
Awareness of MND has taken place by
forming and growing relationships with
various media outlets including BBC
East Midlands Today and ITV as well as
using social media to share events and
achievements.
Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit		 Para 1.18 The trustees receive updates from the
Charity Commission regarding being a
trustee.
The trustees have had regard to the
guidance issued by the Charity
Commission in public benefit.
Policy on grant making Para 1.38 The charity policy on grant making
permits the trustees to approve the
making of a grant to organisations that
have the same or similar objectives to
the charity.
Summary of the main
achievements of the
charity, identifying the
difference the charity’s
work has made to the
circumstances of its
beneficiaries and any
wider benefits to society
as a whole.		 Para 1.20 The following donations were made by
the charity:
1) 11 April 2022 £10,000 to the MNDA
Research
project:
“Connecting
microRNA
and
autophagy
disturbances in MND” – Nottingham
University.
2) 11 April 2022 £5,000 to the MNDA
Nottinghamshire Branch.

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3) 11 April 2022 £5,000 to the Nottinghamshire Hospice 4) 7 July 2022 £20,000 to the Motor Neurone Disease Association 5) 14 March 2023 £100 to the MNDA Nottinghamshire Branch. 6) 14 March 2023 £25,000 to the Motor Neurone Disease Association 7) 15 March 2023 £25,000 to the Motor Neurone Disease Association 8) 31 March 2023 £5,000 to the Motor Neurone Disease Association 9) 31 March 2023 £10,000 to LOROS

Financial Review

Financial Review
Review of the charity’s
financial position at the
end of the period		 Para 1.21 At the end of the period the charity had
raised a total of £76,463 with an
additional amount of £52,903 remaining
from the previous period. Of this
combined total the charity donated
£105,100, spent £2,095 on
administrative fees and purchased
£3,254.45 in merchandise.
This left a total £18,916 in Cash funds
and approximately assets worth £2,000.
Statement explaining the
policy for holding reserves
stating why they are held		 Para 1.22 The charity’s policy is to hold about
£10,000 in reserve. This is to fund
merchandise and events that we will
look to hold throughout the year.
Amount of reserves held Para 1.22 £18,916 in cash funds and £2,000 worth
of merchandise assets.
Reasons for holding zero
reserves		 Para 1.22 N/A
Details of fund materially
in deficit		 Para 1.24 N/A

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Explanation of any
uncertainties about the
charity continuing as a
going concern		 Para 1.23 N/A
The charity’s principal
sources of funds
(including any fundraising)		 Para 1.47 The charity’s principal sources of funds
are from private fundraising.
Investment policy and
objectives including any
social investment policy
adopted		 Para 1.46 The charity is not investing any of its
funds.
A description of the
principal risks facing the
charity		 Para 1.46 The key principal risk for the charity
remains the effect the pandemic has
had on the ability to coordinate in-
person events that provide an
opportunity to raise funds and
awareness of the charity and its
objectives.
Type of governing
document		 Para 1.25 Constitution
How is the charity
constituted?		 Para 1.25 Charitable Incorporated Organisation
(CIO)
Trustee selection methods
including details of any
constitutional provisions
e.g. election to post or
name of any person or
body entitled to appoint
one or more trustees		 Para 1.25 As set out in the constitution, apart from
the first charity trustees, every trustee
must be appointed by a resolution
passed at a properly convened meeting
of the charity trustees. In selecting
individuals for appointment as charity
trustees, the charity trustees must have
regard to the skills, knowledge and
experience needed for the effective
administration of the charity.
Relationship with any
related parties		 Para 1.51 The charity uses Aloha Creative Limited
to provide graphic design and printing
services. Rebecca Clark (trustee) is a
director of Aloha Creative Limited.

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Declarations

The trustees declare that they have approved the trustees’ report above. Signed on behalf of the charity’s trustees

Signature
Full name
Position
Date
Emma Reid Alastair John Hall
Secretary Treasurer

11 February 2024		 12 February 2024

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4. ACCOUNTS

Stand Against MND is a charitable incorporated organisation

Registration Number: 1187436 Registered Address:12 Leveret Way, East Leake, Loughborough, Leicestershire, LE12 6XX

info@standagainstmnd.com

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