WARRIORS ANNUAL REPORT 2023/24
CONTENTS
Introduction
Report of the trustees
What we have delivered this year Warrior pack program Research funding Events
Plans for the future Thank you
Reserves policy
Independent examiners report Financial Statements
INTRODUCTION
CF Warriors was founded to motivate, inspire and support children with cystic fibrosis on their journey to a longer, happier and healthier life. Our mission is to raise awareness of the benefits of sport and exercise to the CF community across the globe.
It’s been a year of change for the charity with our CEO Mark Llewellyn-Jones stepping down from his position and Paul Floyd stepping down as Trustee.
Joshua Llewellyn-Jones our Founding Trustee and Chair, is now responsible for the day to day running of the charity, management of our events, our communications and our corporate relationships.
We’re very fortunate to welcome James Gadd to the Board of Trustees. James brings with him a wealth of knowledge of corporate relationships and is a Senior Business Development Executive at RBC Brewin Dolphin.
We’ve had some fantastic events throughout the year which has kept fundraising efforts high whilst also refreshing our brand to keep CF Warriors moving forward with the times.
The charity is now nearing the end of its fully funded PhD studentship at the University of Portsmouth. Our PhD student Lauren Clayton has submitted her research which is extremely exciting for us and the CF community.
REPORT OF THE TRUSTEES
Report Of The Trustees For The Period 1st April 2023 To 31st March 2024
The Trustees present their report and financial statements for the period ended 31st March 2024.
Structure, Governance & Management
CF Warriors is a Charitable Incorporated Organisation, governed by its constitution as set out in the charityʼs governing document.
Board of Trustees
Joshua Llewellyn-Jones OBE - Chair Paul Langmaid CBE Steve Doyle James Gadd
CF Warriors continues to recruit skilled and experienced trustees to the board to strengthen our team and drive our vision forward.
Management
Joshua Llewellyn-Jones OBE
Joshua manages the day-to-day operations of the charity, ensuring that the CF Warriors charity delivers its vision and mission each week to the families that register with us. This includes all correspondence to the charity, managing the Warrior Pack Program, event organisation and fundraising, website and social media channels, and liaising with our Research Funding Partners at the University of Portsmouth.
WHAT WE'VE DELIVERED THIS YEAR
WARRIOR PACK PROGRAM
This year we have sent out 70 Warrior Packs to families around the world.
Whilst the packs cost around £50 to produce, postage varies between £3 to £30 depending on which country the recipient lives. We also receive requests from returning families for larger clothing as their children outgrow their Warrior Packs. It’s our commitment to these children to see these needs wherever possible as part of our core charitable objectives.
We receive so many kind messages from families along with pictures of their children in the CF Warriors clothing. These families often become heavily involved in the charity by fundraising for us, hosting their own events or even volunteering at our events. We will always be grateful for all the hard work and time individuals give so readily to the charity to support our cause.
RESEARCH FUNDING
Background:
New medicines like Kaftrio can help people with cystic fibrosis (CF) feel better and healthier. However, there are worries about rising obesity and heart disease risks, and we don’t know if these medicines can really make fitness better. We also need to learn more about how they affect hydration, salt intake, and heatrelated illnesses. This research aimed to find out how Kaftrio affects these areas to give better advice on exercise and nutrition for people with CF.
Objectives: This PhD aimed to study how Kaftrio affects exercise, muscle function, body composition, and heart and blood vessel health. We also looked into how people feel about hydration, salt intake, and how their bodies manage heat. The goal was to gather important information to help improve exercise and nutrition for people with CF.
Methods: We did two main studies: the Understand-CF study, which looked at fitness and health, and another study focused on hydration and heat stress. We invited people with CF on Kaftrio and compared them to healthy people of the same age and sex. We measured aerobic fitness through exercise tests while checking their breathing, heart, and blood vessel responses. We tested leg muscle function using different physical tests and special tools. We also checked body composition, heart and blood vessel health, and physical activity. A survey and lab study looked at hydration, salt intake, and how the body deals with heat.
Key Findings: This research gave new information about exercise and muscle function in people with CF on Kaftrio. It showed that they can have normal muscle strength and body composition, but their fitness may still be lower, possibly because of heart problems. While small blood vessels worked well, there might be issues with larger ones. We are still looking at data about hydration and heat issues. This shows that exercise and healthy eating are more important than ever for people with CF, and we need to create better hydration plans for exercise.
RESEARCH FUNDING
Impact and Conclusions: This research shows that while Kaftrio helps, it isn’t a complete solution; exercise and nutrition are very important for overall health. We need to create personalised plans to manage heart health, and more research is needed to improve hydration and exercise preparation for people with CF, especially as the climate changes.
Future Plans: We plan to keep this research going, using what we learned to support larger projects and working closely with CF Warriors. Future studies will check these results in people with CF with more advanced disease and look at long-term heart and muscle health. We will also explore ways to improve exercise and nutrition, making specific guidelines for hydration and preparing for exercise in hot weather.
The full report on our Research Findings is also available for download at https://cfwarriorsorg.com/shop/f7b289c6-94e4-454e98a7-15d7719a4941
EVENTS
24hr Warrior Games 2023 Enzo Gibson’s CF Warriors Triathlon Jason Blight’s Boxing Fundraiser Alex Rainey’s Swimming Fundraiser Nikki Barnsley-Walker’s Fundraiser Michael Lewis’s tandem Skydive Charlie Cheese’s 65 mile row for CF Warriors Ollie Payne’s Skydive for CF Warriors Freddie Davy’s Skydive for CF Warriors Jordan Anaya’s Skydive for CF Warriors Polly Cooper’s Skydive for CF Warriors
PLANS FOR THE FUTURE
To spread the awareness of the research findings and educate Cystic Fibrosis families on the importance of exercise and good nutrition. Whilst new medications are really powerful for some people with Cystic Fibrosis, they don’t negate the need for consistent exercise and keeping on top of a healthy, balanced diet.
To continue to grow the Warrior pack program. We want to try and reach as many children as possible and where possible, support them as they outgrow their Warrior Packs.
THANK YOU
Thank you’s for supporting & volunteering Adrian Llewellyn-Jones Angharad Jenkins Dawn Llewellyn-Jones Paul Madley Paul Langmaid CBE Stephen & Karen Doyle James Gadd Buffoon Film & Media Paul Fears Photography Enzo & the Gibson family Caroline Sims Johnny Gray Kyle Young All the staff at 29 Regiment David Doidge Lucy Jones Acapela Studios Jayne James
BRIEF STATEMENT OF POLICY ON RESERVES
During the year, our expenditure exceeded income by £13,210 and therefore our cash reserves at 31 March 2024 reduced to £19,885 (FY 23: £33,035) in unrestricted funds.
However, gross donations and event income during the year actually increased from £51,838 to £77,379. We did not receive any grant income during the year, compared to the £25,000 we received in the previous year. The increase in donation and event income is testament to the hard work of our team and the engagement they engender in the CF community and beyond.
During the year, PhD funding was some £13,800 more than last year and this is the principle reason for the deficit recorded in the year compared to the surplus reported in the previous year.
We are confident that with the events and plans we have in place for the coming year 2024-2025, our financial position will return to surplus and we will be able to meet all our financial obligations regarding the Warrior Pack Program in the years ahead and expanding our reach across the CF community.
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CHARITY COMMISSION Independent examinerfs report on the FOR ENGLAND AND WALES accounts S•ctlon A Independent Examlner's Report R•port to thfr trustoul memborj of CF Warriors On accounts lor th• year 31 March 2024 ond•d Charlty no 111 any) 1178063 Set out on pages The Trustee's Report and Accounts set out on pages 1 to 14 of the attached report. I report lo the trustee$ on my examlnation of the a¢¢ounts of the above ch8rily (Ihe Trusl'l for the year ended 31 March 2024. Respon8lbllltl•s and ba•18 of r•port As the charitys trustees, you are responsSble lor the preparation of the account8 In accordance with tho requlremenl8 of the CharltSes Act 2011 ("th8 Act"). I report In respect of my examinatlon of the Trust's accounts caTrled out under sectlon 145 of the 2011 Act and In carying out my examination. I have followed all the appllcable Dlrectlons glven by the Charlty Commisslon under S8clion 14515)Ib) of the Act. Independont I have completed my examination. l Confirm that no material matters have •xamln•rf8 8tat•m•nt come lo my attention In connecuon wlth the examlnation which gives me cause lo believe that In, any material respect.. the accountin9 r8cords were not kept In accordance wlth sedon 130 of the Charities Act., or the accounts dld nol accord wlth the accounllng records., or the accounts dld not comply with the applicable requlrements Concemlng the form and content of accounts set out in the Charltles (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a 'lrue and fair. view which is not a matter consideréd as part of an independent examination. I have no concems and have come across no other matters In connection wllh the examlnatlon to whlch attenuon should be drawn In thls report In order to enable a proper understanding of the accounts to be reached. Slgnad: fflL_ 30 January 2025 Nam•: Stephen Thomas Relevant profosslonal ACA qualmGatlon(81 or body (If any): Addross: | 4 Gold Tops, Newport, NP20 4PG