OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2023-03-31-accounts

WAR￿oR5 ANNUAL REPORT 2022/23

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, through events, our Warrior Pack Program, and the publication of vital research funded by the charity.

It’s been an exciting year for the charity with events making a full come-back. Whilst there’s still been some challenges due to Covid-19, supporters, volunteers and CF families have been very keen to attend events, fundraise and raise awareness for children with Cystic Fibrosis.

The charity is now in its second year of its fully funded PhD studentship at the University of Portsmouth. Our PhD student Lauren Clayton is well underway with her research and the research program has been refined and features some world first observational study to understand the fitness, body composition, physical activity and sleep patterns in people with cystic fibrosis on cystic fibrosis transmembrane conductance regulator modulator therapy compared to healthy controls, providing World first data in a number of areas.

Our Warrior Pack Program has continued to be incredibly popular over the last 12 months and we have added even more contents to the packs, whilst still managing to keep the costs to around £50 per pack.

REPORT OF THE TRUSTEES

Report Of The Trustees For The Period 1st April 2022 To 31st March 2023

The Trustees present their report and financial statements for the period ended 31st March 2022.

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 Paul Floyd

CF Warriors continues to recruit skilled and experienced trustees to the board to strengthen our team and drive our vision forward.

Management

Mark Llewellyn-Jones - CEO

As CEO, Mark 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 120 Warrior Packs to families around the world, and despite rising prices, we have managed to keep the costs of our packs to £50 per pack (not including postage), whilst adding even more items to them to help children stay active and motivate and inspire them to be the best versions of themselves.

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 chatty 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

Summary of Progress Made by PhD Student Lauren Clayton. April 2022 – March 2023

Lauren the PhD student has successfully completed 1.5 years of study and training. Her PhD title has now been refined from: Exercise and Nutrition for People with Cystic Fibrosis in the Modulator Era to

Central, peripheral and thermoregulatory physiological response to exercise in ambient and heat stress conditions in people with cystic fibrosis on modulator therapy

Programme of research:

1 – Evaluate the current hydration / salt requirements for people with CF (global) – underway – Saynor leading review on this topic – 50% complete

2 –Study 3: Lived experiences of salt supplementation, hydration, thermoregulation, sweat and heat-related illness during rest, exercise and exposure to hot environments in people with cystic fibrosis: an international cross-sectional survey-based study. Survey responses are slow, ethics being amended and in conversations with other international CF organisations to assist with sharing this use

3 – Laboratory Study: The Sweat-CF study: A study to assess the sweat response, sweat composition and thermoregulatory response to exercise in heat in people with cystic fibrosis on cystic fibrosis transmembrane conductance regulator modulator therapy compared healthy controls.

This is a World first study – only a handful of studies have explored the responses of people with CF in the heat – none using the techniques we are using and none on CFTR modulator therapy. Will provide valuable insight into the baseline presentation of people with CF but also then how their body’s respond.

4 – Laboratory Study: The Understand-CF Study: An observational study to understand the fitness, body composition, physical activity and sleep patterns in people with cystic fibrosis on cystic fibrosis transmembrane conductance regulator modulator therapy compared to healthy controls.

RESEARCH FUNDING

Providing World first data in a number of areas.

  1. It is unlikely that modulators alone can improve and then maintain fitness at high, healthy levels (case studies suggesting this) – this will provide gold standard data regarding the current picture in CF in the modulator era – detailed physiological assessments will help us understand a number of key organ systems and to what extend they can be ‘fixed’ with modulators

  2. Body composition (fat, muscle and bone) being assessed using gold standard best measures of DEXA as well as detailed assessment of muscle function

  3. Cardiovascular health is a big concern in CF at present and in the context of ageing – within which diet and exercise are going to be essential. We have collected the most comprehensive set of data in People with CF representing cardiovascular health and the ETI era provides novel insight into what the future may look like

All of the above are hot topics in cystic fibrosis at present and moving forward, placing CF Warriors firmly on the map from a funder perspective.

The heat-related work was also recently launched to parliament - at the parliamentary launch of ‘Red Alert: Developing a Human centred National Heat Resilience Strategy’, a collaboration between the Physiological Society and Faculty of Public Health. Saynor (co-Lead of the Clinical Hub at The Physiological Society) was an invited expert and highlighted in particular the need for specific attention to be paid to support vulnerable populations, showcasing people with cystic fibrosis as a key example of this.

RESEARCH FUNDING

6 months – 1 year (April 2022 – September 2022)

✓ The Understand-CF study ethics application submitted, ethics meeting attended, approval grant by the South Central – Berkshire B NHS Research Ethics Committee and the Health Research Authority (22/SC/0168) and study pre-registered on clinicaltrals.gov (NCT05857709).

The ethical application process:

Applying for NHS ethics approval involves 5 keys steps: First is the development/preparation of your research proposal and study design alongside all participant facing documents, including participant information sheets, informed consent forms, posters, questionnaires/scales and any other material needed for the study to run.

Next is the application form that must be submitted though the Integrated Research Application System (IRAS). This application must be completed in line with your research proposal and study design. You must provide a descriptive explanation of the study including, objectives, methods to be used, what is involved for participants, risks/risk prevention and any benefits.

Following submission of your research proposal and application, it will go to a Research Ethics Committee consisting of professionals, experts and lay members for review, who will consider all ethical aspects to ensure safety to all participants.

You will often attend a Committee meeting; this gives the committee time to ask any further questions about the proposal and design and raise any concerns they may have.

After the Research Ethics Committee have reviewed the application, you will be given feedback and revisions. You must address any concerns and adjust your protocol and/or participant facing documents where necessary and resubmit your application for a second review.

Once the second review has happened, provided you have addressed any concerns and made the adjustments the Research Ethics Committee will grant you favourable ethical approval and you can begin recruitment.

RESEARCH FUNDING

✓ The Understand-CF study up-skilling in protocol methods.

Before data collection could commence Lauren dedicated considerable time to learning and becoming proficient in a wide range of advanced laboratory techniques and the analysis. Techniques include; Insulin and Acetylcholine Iontophoresis and Flow-mediated dilation technique for assessment of blood vessel health; Cardiopulmonary Exercise Testing for the measure of aerobic fitness, alongside the use of a Near-infrared Spectroscopy device and a Physioflow device for measures of muscle deoxygenation and haemodynamic responses, respectively; globally recommended field-based exercise tests for measure of muscle function; use of the Isokinetic dynamometer for measures of muscle function; dual-energy X-ray absorptiometry (DEXA) scanner for the means of measuring body composition; and use of a wrist -worn accelerometery device for the measure of physical activity and sleep behaviours.

To become proficient in DEXA scanning, Lauren completed the Ionising Radiation (Medical Exposure) Regulation Training. The training consisted of two components; a taught element, covering the basics and regulations; and an in-person training day which covered the use of equipment, correct positioning and the analysis of the scans. Insulin and Acetylcholine Iontophoresis:

Flow mediated dilation technique

Flow mediated dilation technique

RESEARCH FUNDING

✓ The Sweat-CF study Pilot testing. Pilot testing was a crucial phase that was completed in 7 participants to assess and refine our protocol, techniques and overall approach in the development of the project. By pilot testing, we were able to practice the methods and techniques as well as uncover any potential issues or challenges that arise during the study.

During this time, we were able to adjust the length and intensity of the protocol to ensure it was comprehensive yet manageable for our population and identify the most suitable temperature conditions for conducting our research.

✓ Placement with Dr Don Urquhart in Edinburgh. Lauren successfully secured £500 to undertake a placement at the Royal Hospital for Sick Children, Edinburgh, UK. During Lauren’s time there, she had the opportunity to shadow Dr Don Urquhart as well as key members of his team. Dr Don Urquhart is a wellrespected clinical academic in Paediatric Respiratory Medicine working at the Royal Hospital for Children and Young People and an Honorary Reader at the University of Edinburgh. Dr Urquhart co-chairs the European Cystic Fibrosis (CF) Society (ECFS)

RESEARCH FUNDING

Exercise working group and has a long-standing collaborative relationship with, Dr Zoe Saynor. The activities on this placement included; (1) observing clinical respiratory testing, including cardiopulmonary exercise testing (CPET) in children with a number of pathologies; (2) meeting researchers actively engaged in CF research projects involving exercise. Observing how research is conducted in a clinical exercise physiology lab; (3) giving a talk about the research funded by CF Warriors to the team in Edinburgh, sharing the work and promoting the charity to researchers and medical professionals actively working in the field of cystic fibrosis.

✓ Independent medical officer training day . During the independent medical officer training day, Lauren engaged in a series of comprehensive workshops learning and gaining competencies in a number of critical medical skills enhancing Lauren proficiency in handling diverse medical scenarios. These workshops encompass:

RESEARCH FUNDING

✓ First aid at work training day . The University of Portsmouth’s first aid at work training day provides a chance to refresh skills and stay updated on guidelines and techniques. During this training there is an overview of the importance of first aid and its role in emergency situations. It covers basic life support and CPR, managing bleeding and wounds and airway management. ✓ Attendee at the University of Portsmouth Rehabilitation conference.

✓ Major review: As a full-time postgraduate researcher Lauren was required to undergo a Major review following 1 year of her PhD. The purpose of a Major Review is to confirm the student’s capability to satisfactorily complete a PhD thesis. To complete this Lauren was required to write up and submit a Major Review document stating the aims of her research, a literature review, am outline of her research, a provisional timetable for the programme of research, her research progress and an outline of any researcher development activities she has completed. In addition, Lauren had to prepare and present a presentation to the school. Lauren successfully completed her Major Review - COMPLETE

RESEARCH FUNDING

1 year – 1.5 years (October 2022 – March 2023) ✓ The Understand-CF study recruitment and data collection ongoing:

Recruitment: Lauren has been working closely with CF clinicians and physiotherapists within the adult and paediatric CF teams at the University Hospital Southampton to identify individuals that meet the criteria for participation in the studies. Time has been dedicated to engaging with potential participants to provide details about the research and generate interest. Once potential participant express interest further screening is completed where necessary and participants are enrolled into the study.

Data collection: Lauren began data collection in January 2023. Data collection involves bring participants in to the Laboratories at the University of Portsmouth and implementing the ethically approved and predetermined protocol and advanced laboratory techniques. Before each testing session, all equipment must be set-up and calibrated to ensure accurate measurements are taken. After each testing session, certain techniques require additional analysis before the final results could be recorded.

✓ The Sweat-CF study ethics application submitted, ethics meeting attended, approval granted by South East Scotland NHS Research Ethics Committee 01 and the Health Research Authority (22/SS/0102) and study pre-registered on clinicaltrals.gov (NCT05896488).

RESEARCH FUNDING

✓ The Sweat-CF study up-skilling in protocol methods. Prior to commencing the study, Lauren spent considerable time in gaining expertise in the operation of the environmental heat chamber alongside various specialised equipment used to assess individuals’ physiological responses and tolerance to heat exposure. Specially Lauren has learnt how to use:

Physiological monitoring equipment:

RESEARCH FUNDING

✓ Study 3 survey design : this involved defining the research objectives and hypotheses, determining the survey methodology and developing the survey questions. As such the study has been designed to collect cross-sectional data on the experience of people with CF in the heat, during exercise and their current understanding of salt supplementation and hydration guidelines. It will be disseminated online using the onlinesurveys.ac.uk interface (JISC, Bristol, UK) with survey links distributed via social media to people with CF ≥ 16 years old worldwide and parents/guardians of people with CF aged 6 - 15 years to represent the paediatric experiences. The survey has been designed into 4 sections.

Briefly, the survey will capture 1: participants’ demographic information; 2: information regarding physical activity and exercise behaviours; 3: experiences sweating and the composition of this, alongside other symptoms of exertional heat-illness and dehydration and 4: knowledge and use of salt and hydration guidelines, current dietary salt intake and use of salt and electrolyte supplements during rest, exercise and when in a hot environment. The survey is composed predominantly of multiple-choice answers. Where appropriate, participants will be asked whether they would like to add any additional comments to the statement.

✓ Study 3 completion of ethical application to be submitted for review to the Science and Health Faculty Ethics Committee. The ethical application comprises of 14 main sections, including details on; the study title and key dates; applicant details; details of peer review; funding details; insurance/indemnity arrangements; aims and objectives/hypotheses;

justification/summary of study; description of methods/protocol and risks; compliance with laws, codes, guidance, policies and procedures; recruitment of participants; data management; publication/impact/dissemination plans and references.

✓ Independent medical officer training day:

ECG workshop

Extreme environments laboratory simulations workshop

COMPLETE

RESEARCH FUNDING

Next steps:

1.5 years – 2.5 years (April 2023 – March 2024)

Over the upcoming year, our primary focus will be to continue recruitment and data collection for the Understand-CF and Sweat-CF study. Alongside this we will initiate the write up of our research findings, whilst attending international conferences to disseminate our research finding.

⧗ The Understand-CF study and the Sweat-CF study recruitment and data collection continued: Lauren will continue to work closely with CF clinicians and physiotherapists within the adult and paediatric CF teams at the University Hospital Southampton to identify individuals that meet the criteria for participation in the studies. Time will continually be dedicated to engaging with potential participants to provide details about the research and generate interest. Once potential participant express interest further screening will be completed where necessary, and participants will continue to be enrolled into the study.

⧗ The Understand-CF study research paper writing: data collected during the Understand-CF study will be written up into 3 research papers, of which titles have been refined to:

1: Mechanisms underpinning fitness during ramp exercise in people with cystic fibrosis on Elexacaftor-Tezacaftor-Ivacaftor. 2: Cardiovascular health and physical activity in people with cystic fibrosis on Elexacaftor-Tezacaftor-Ivacaftor: a crosssectional, observational, single-centre cohort study.

3: Peripheral muscle function and body composition in people with cystic fibrosis on Elexacaftor-Tezacaftor-Ivacaftor: a crosssectional, observational, single-centre cohort study.

RESEARCH FUNDING

⧗ Study 3 ethics application to be submitted and approval granted by the Science and Health Faculty Ethics Committee and data collection to begin.

⧗ Lauren will apply for funding to attend the European College of Sport Science Conference 2023 in Paris. Attending a conference will provide Lauren with numerous opportunities to learn and develop as a researcher. It will provide a chance to access presentations and keynote speeches by experts sharing the latest findings and advancements as well as providing an opportunity to connect with peers and meet experts in the same field.

⧗ Lauren will apply for funding to attend the Near-infrared spectroscopy workshop 2023 in London.

⧗ Lauren plans to submit a poster to the Research and Innovation Showcase at the University of Portsmouth. This will serve as a platform to highlight the being funded by CF Warriors.

⧗ Annual Review: As a full-time postgraduate researcher Lauren is required to undergo an Annual review following 2 years of her PhD. The purpose of an Annual Review is to confirm the student’s capability to satisfactorily complete a PhD thesis. To complete this Lauren will be required submit and present a presentation to her assessors outlining the background of her research, her thesis outline, an overview of each study, a summary of progress, a plan for the year ahead and all research and personal development undertaken.

⧗ Lauren is planning to obtain funding through the postgraduate research students conference bursary. Her aim is to submit multiple abstracts for presentation at the European Cystic Fibrosis Society Conference 2024 in Glasgow. If successful Lauren will present the research findings to an audience comprising of CF researchers, clinicians and healthcare professionals as well as patient advocates and supports groups dedicated to individuals affected by cystic fibrosis.

IN PROGRESS / FUTURE PROGRESS

EVENTS

Iain Maynard Charity Ball – 2/4/22 Warrior Games - June 2022 - Cancelled to September 22 CFW Lunch September 2022 -

Jayne James Fashion Show - Loulou Boutique Jolly Jingle Jog for CF Warriors - 4/12/22 Xmas at Acapela - 12/12/22 6500 Walk for Violet – Team Ditcham Warrior Games 2022 Kerrie's Black & White Ball and Sports Activities Event 50 mile bike ride challenge! (Scarborough-WhitbyScarborough) 24hr Warrior Games 2022 Linda's Charity BBQ and Rob Lamberti FTR Ladies Do Warrior Games 2022 Warrior Games 2022 Rosies page Janes page Lara's page Remembering Matthew Lara's page

In memory of Matthew – Lara Massie Becs Swansea 70.3 Ironman for CF Warriors

Max & Pattie Dobbyne- Childrens Christmas Jingle Jog Woody's Warriors' Page Warrior Games 2023

Kerrie Stoner who rallied the troops in Dover for the Warrior Games and helped to make a huge difference - Whiteciffs Warriors

Anna's page – Anna Gould Elie and Anna Run London Pain Score 10! – Warrior Games 2023 ASC WARRIORS take on the warriors games 2023 Warrior Games 2023

Tom, Joe, James and Callum's fundraiser for CF Warriors.

PLANS FOR THE FUTURE

To complete our Research Funding Program, and disseminate all the relevant findings from the 3- year project to the wider CF community. Once all the information is gathered, we can then look to send this information out to the CF community through marketing campaigns.

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 Emma Floyd Dawn Llewellyn-Jones Adrian Llewellyn-Jones David Doidge Anna Gould Enzo & the Gibson family Caroline Sims Johnny Gray Kyle Young All the staff at 29 Regiment

Donations

Lumen Financial - £2500 Sharon Holmes , Jason Gavin Holmes

Denval Co Ltd – Jemma & Tricia Morris Denver Drilling Nigel John & Hern & Crabtree (£800) Ben Shephard (Book) - £500 Inverhow - £250 Moondance Foundation - £12,500 Waterloo Foundation - £800 - Auction Winner Waterloo Foundation - £10,000 Dani Warburton - £1267 - Violet Ditcham 6500 Event Amanda Arter Jayne James & Loulou Boutique Chris Stroud - auction donations - £2624.35 Denise Yapp ST Tewdrics House - 350 Acapela - £1592 - Tickets Scott Wheeler - £615 & £827.50 - HMP Hewell to Calais Rowing Event Karen Doyle Sam Williams - £100 St Tewdrics House - £350 - Lunch Sponsorship - October 2022

Jenny Wildig - £500 Virtual Warrior Games Dr Issie Graham Rosie Moriarty-Simmonds OBE

BRIEF STATEMENT OF POLICY ON RESERVES

Cash reserves at 31 March 2022 were £33,095 in unrestricted funds. To continue our Warrior Pack Program alongside this research funding, it is necessary to hold at least £25,000 to cover the running costs of the charity.

We are confident that with the number of plans we have in place for the coming year 2023-2024, our financial position will improve considerably, and we will be able to meet all our financial obligations regarding our Research Funding and the Warrior Pack Program in the years ahead.

(HARITY (OMMISSION Independent examiner's report on the FOR ENGLAND AND WALES accounts Section A Independent Examlner's Report Report to the trusteesl mombers of CF Warriors On accounts for the year 31 March 2023 ended Charlty no 1178063 (If any) Set out on pages The Trustee's Report and Accounts set out on pages 1 to 8 of the attached report, I report to the trustees on my examination of the accounts of the above charity (Ihe Trusf) for the year ended 31 March 2023. Re$pon$lbllllle$ and ba818 of report As the charitys trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ('the I report in respect of my examination of the Trust's accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145{5){b) of the Act. Independent I have completed my examination. I confirm that no material matters have examlnerfs statement come to my attention in connection with the examination which gives me cause to believe that in, any material respect.. the accounting records were not kept in accordance with section 130 of the Charities Act; or the accounts did not accord with the accounting records; or the accounts did not comply with the applicable requirements conceming the fomi and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a 'true and fair, view which is not a matter )nsidered as part of an independent examination. I have no concems and have come across no other matters in connection with the examination to which attents'on should be drawn in this report in order to enable a proper understanding of the accounts to be reached. Slgned: JL_ Date: 31 January 2024 Name: Stephen Thomas R•l•vant profosslonal ACA qualification(s) or body (If any): Addre¥3: 4 &Jd Tops. NgwsMy( NY20 4PG

CHARITY COMMISSION FOR ENGLAND AND WALÉS 1178063 Receipts and payments accounts For tho p•rlod To 411r22 3ts1123 Section A Receipts and payments Unrestricted Endowment funds Total funds ta lh• A1 Rtt•Spt Don81iiJns Evenl sp￿rnhip aTrJ lickel Gr8nts 41.￿8 22,5110 Sub total(Gross incom8 forAR) A2 A•••t •nd INV￿lm•nI •l••. IM• tabl•}. 74yQ 74340 Sub total 74,340 74340 A3 Paym•nt• Gr8n18 to l￿d roa•arch 'CF Wgrrfof pKki dl$thbuled fr•• ol¢h•ry• Employee oMIs Office colts and fundra￿ng ow Soc￿1 rr•dkq exponuo5 Legal aTrJ pwl8ss￿￿￿l feos communicats"C￿ IT 6xpen8es Event expgnsos B4nk and p8ynk•nl pwc•¥ilng f••1 In8ur8r 13.2(tyJ 9.028 23.307 7.832 8S7 1.391 13.21)0 9.020 23.307 7.832 8SI 1.391 2.905 19 759 Sub total 67.401 87,408 A4 Asset and InV￿tmont purchas￿, Is•• table} Sub total 07.408 Net of recelpts/(payments) A5 Tran$l•rs b•tWg8n funds A6 Cash fvnds last yèar end Cash funds thls year end 6.932 6,932 26.163 33,095 26.163 33,095 Section B Statement of assets and liabilities at the end of the period CCXX R1 accounts {SS) 0210212024

Unrnstrl¢t•d funds to nMrM¢ £ Restrlct¢d funds Cat•g0rf•• to nMr••t £ B1 Cash funds Cash 737 642 Total cash fvnds 33.095 Unrnstrlctsd funds R•strICt￿ fund Details to nur•¥t t to nMr••t £ Fund ¢tyTthl¢h ••w¢ Detalls Cot loptbonall B3 Invostment a$￿ts Fund to whkh A•Wt b•lonp D•tall8 Ca•t laptlon•ll B4 Ass•ts rotaln•d for th• charlty's own use Fund to fftlch Il•billty r•l•t•• Amount duo loptlon•ll l)•tall• B5 Llabllltl•• SvJned by one or tsvo trLthes on behawof ￿1 Ihe trusiees Signature Print Name CCXX R2 accounts {SS) 0210212024

CC16a L•it y•*r to th• n8a¥•st £ 42,306 42,306 42,306 13,731 23,308 7,288 2,eoo 1,178 2,086 413 341 52.001 52.1x11 9.695 3S.858 26.163 CCXX R3 accounts (SS) 0210212024