'TMi * 4 The Queen's Award for Voluntary Service Ann Chal belle's er)ge ANNUAL REPORT AND ACCOUNTS FOR THE YEAR ENDING 31st MARCH 2024 Vascular EDS Our Challenge To Find Your Cure Charity Registration No. l 157074 celebraLiflg 10 yearsl 2013- 2023
Ann belle's enje TheQueen's Award forvoluntary Servl<e Structure, Governance and Management Names of Charity Trustees David Catterall DL Andy Fish Megan-Thornton-Thompson Christina FaLIows CLare Edge Charity Registration Number 1157074 Registered l 6th Moy 2014 Registered Office AnnabelLe's Challenge WaLshaw Park House Walshaw Rood, Bury BL8 IPY Independent Examiner Jonathan Staples FCA Horsfield & Smith Tower House 269 Walmersley Road, Bury BL9 6NX Horsfield & Smith Bankers NotWe5t Virgin Annobelle's Challenge gained charity status on the 16th Moy 2014 and is a Charitable Incorporated Organisation (CIO) governed by its constitution dated I Ith March 2014 by a board of trustees. The trustees delegate the day-to-day running of the charity to the founder & CEO Jared Griffin who in turn gains input from all trustees on major decision-making. Regular communication is maintained with alL trustees. The charity is managed by the trustee body and decisions carried with a majority vote. The trustees pay due regard to the Charity Commission guidance on pubLic benefit in deciding what activities the charity shouLd undertake. The trustees hove assessed the mojor risks to which the charity is exposed and are satisfied that systems are in place to mitigate exposure to the major risks. The charity is covered by £5,000,000 public Liability and employers, liability insurance with Zurich. The annual report was approved by the trustees of the charity on 30/0112025 and signed on its behalf by.. David CatteralL DL Chairperson
Ann belle's enge The Queens Award forvoluntary Servl<e Annabelle's Challenge Vascular EDS Chority Annabelle's Challenge is the leading charity for voscular Ehlers-Danlos Syndrome (vasculor EDS) in the UK and proud recipients of The Queen's Award for Voluntary Service. At the heart of the charity is AnnabeLle who is the inspiration behind our challenge to provide education, research and support for patients and families affected by vascular EDS. The charity was founded in 2013 by Jared ond Saroh Griffin shortly after their doughter Annabelle was diognosed at the age of 3, at that time she was the youngest in the UK to be diagnosed with vascular EDS. Vascular EDS {vEDS) is a connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile. Patients are at doily risk of sudden orterial or organ rupture and it is thought to affect around 740 people in the UK. Vascular EDS con be very voriable even within the same family. It is also rare and therefore many heaLth professionals wilL not have seen someone with this diagnosis. With the correct precautions in place, people can live very long Lives with vascuLar EDS (Our database has of 70180+ years old). Our Objectives EDUCATION To advance the education of the general public and medical profession in alL areos relating to vascuLar EDS. RESEARCH The relief of sickness and preservotion and protection of good heaLth by the provision of funding for the development of research and early diagnosis of vascular EDS. SUPPORT To promote and protect the physical and good mental health of sufferers of vascuLar EDS, their families, and carers through the provision of finonciaL assistance, support, education, and practical advice. How we support the VEDS community Most peopLe who contact AnnabeLle's Challenge require information and support. We provide first-hand lived experience and advice to those who need support including: Free famiLy, lifetime membership. Access to our VEDS Support Programme. School and Nursery guidance and support. Information via ourwebsite, Facebook, X, and Instagrom pages. Weekly newsLetters, emails, ond updates. Free MedicAlert UK membership & exclusive discounts. Dedicated freephone helpline service, supported by our patient coordinators. Conferences and retreatweekends. Free, confidential Counselling SeNice. Access to research and clinicaL trials.
14 Achievements and Performance Thanks to our members, donors and The National Lottery we have raised £239,263 this year and we are well on track to achieve the £ 1,000,000 milestone way ahead of our planned Vision 2025 goal. Over the past 12 months we announced 5 new research projects, hosted 2 VEDS retreat weekends, 9 VEDS support groups, Launched a new Counselling Service and a new VEDS Emergency Information Pack. We aLso weLcomed 69 new members representing 76 patients. AnnabeLle's Challenge now has 539 patients registered on the database across 22 countries, we aLso celebrated 10 years sincewe launched in January 2013. It has been super busy for the team in delivering the VEDS Support Progromme thanks to National Lottery funding. The charity supports over 440 members touched by vascuLar EDS, since the support programme was launched in August 2021, we have recruited new Patient Coordinators and together Team AC have so far achieved: 0 44 x School & Nursery visits O 101 x MedicAlerts Mental Health Flrst Alder en's Awai< tary S•rvk.. 0 134 x EDS Sunflower Lanyards I's Award • ry Service y 0 143 x Ambulance Markers 0 248 x VEDS Emergency Informotion Packs O Mental Health First Aid accredited by MHFA England O Community Champion award by EDS Support UK for olui . COMMUNITY FUND
VEDS Steering Group The VEDS Steering Group will help to shape the future of the charity as it continues to grow providing SUPPOrt, guidance and overseeing the progress of aLI community-based projects including events and research in the UK. The VEDS Steering Group is made up of volunteers who are directly touched by VEDS including patients, parents and carers, they are supported by genetic counsellors from the EDS National Diagnostic Service with representation from both cLinics based in Sheffield and London and an ICC Advanced Nurse Practitioner. Steering group aims: Provide input based on their direct experience of VEDS. Give strategic direction. Support the charity. Enable more people diagnosed with VEDS to fulfil their potentioL by working to address issues at the earLiest possible stage through the VEDS Support Programme. VEDS Regional Support Groups Our regionoL support groups across the UK are for those who are touched by vasculor EDS and all family members are welcome to attend. SCOTLAND The groups are managed by our volunteer regionaL coordinators creating a safe, reLaxed environment where people can share experiences, advice and provide peer support creating Life-long friendships with others. [rte Glo$go Our potient Coordinato work closely with the volunteer regionaL coordinators to help plan suitabLe venues and logistics across the U NORTHE, IRELANb Kingdo Man Ireland WA. ENGL ale My,Maps
Board of Trustees .ward ervice David Catterall DL Meg Thornton-Thomp50n Andy Fish Christina Fallows Clare Edge Chalrp•rson Trust• TrUSt• Trust• Trust4• Dawd look up rhe role of trustee arTrd Hi. I'm Meg. FolloY4er5 ofAnnaWWs ch21rperson of Annabelle's Challenge in Challenge may know me as the Lady May2022. behind thecamero os Yve been rhe AC photographer since meeringlared. Sarah and Annabelle in 2016.1 SLarted myphotography busirbe55 bark in 2013 specialising inweddings eventsaid ¢ommer¢ial pr¢du¢rs. Andy 15 a Chartered kcountant Chnstinalned Annabelle'schallenge Clareioined Annabelle's Challenge in qualifyirg in 1993. He has spent his in 2013 352 volunieer before taking up December 2018 and has taken on career working In rhe h95piralrty rde ol parienr coordilor In 2019. rhe role Df rrusiee on the Annabelle'5 Industry currentya5 the Chief linarKial a role she held for 3 years helpingto Challenge board effe1Ve from 1st Orfttr ofiheyotel hotd group- shapèihè fulufe of the thariry and Ociober 2023. Prior 10 her aPPOinent Secun¥al fundinglrotn The ro rhe board of trustee5 Clarewa5 a National Lottery. member of theVEDS 5teeringGroup. Her San w£5 diagnosed with v¥xular EDS in 2(M)7. He Is a champion of the LGBTQI community in Buryond ha5 built up a suciessful careerat Bury Council arKI is now Head of Commercial Service kntysson was dIagsed vlith VEDS i 2(X)5aTh4 hisfe1ul volunieetsfor thecharityasthearea (LrdOr l am a qualif ()ciupationalTherapit South East Enwand. l a150 have a background In Child and Adolescent Mental Health Serwces ICAMH51 SuprA)rringyoung peopleith their re(OVEry and tnenral heah journry. "InAugust 20191 wa5 delighted totake onthe nes roleas the patient totrdinatorfor the charitytp help Clare Is a senior 5ale5consulrant at support all our members both existing Oxford University Pre55and a150 a and rlYdiagnOSed. My role included trusiee for thewalkand Talk Trust. t[WithevEDs dabSe. pro%ryding 5UPPOrt & athice, supw>rtingthe CEO and faciliLaung referrals to EDS dinjcs in SheffEld & London. l arn a150 a Mental HeBlih FirstAider accredited by MHFAE4n." As %ll ag being In¥0ed In Supporting the LGBTQl+ comtllLJnity ID Bury and Greater Manchestef. he co-founded the Bury LGBTQI. Fprum. a charity¥vhich 5UPPOrts LGBTQI" people and helps organitIoNs to be Inclusive. He has been instrumental in driving and leading Bury Pride to become the UKS belt small pride èvent In 2021. Previous roles include leS and a flight attendani atw11 Atlantic and kudi Beingat each of the events. fundrarrs and the VEDS conferences. I trVe£een up dose rhe itnwctvEDS has 0 Individuals and f3milli. and fm hgnDurEd to have a tnore 5ub51anro1 rolewithin Annabelle's ChaInge in helping them raise awarenegsand lund5 ro 5UPPQrt the VEEIS cryptnunity and further researih. David was made 3 Deputy Lieutenant of Gaer Manchesier In March 2022. Chri5rina hasa fitx cla55 honours in Psyclogyand 15 currentlya h0o1 Support Ork. 5heioined the board oftrustee50n 1st March 2023. Regional Coordinators 141,1:,, Linda Clamp Sophie Leftley Claire Hall Taylor Barlow Gemma Hasnaoui South West Jacqui Fish Scotland Yorkshire & Humber East Afila South West South East Th•QUeh'sAwrd ForVolTrtary5Or1l(e 11 Peter Black Bonnie Jackson Lynda Allen Danika Davidson Scarlett Thomas Jared Griffin North East London Wales North West Iroland & Northern Ireland East &West Mldlands
The MBEfor volunteergroups Queen's Award for Voluntary Service Annabelle's Challenge are proud recipients of The Queen's Award for Voluntary Service. The unique UK national honour was created by Her Majesty to mark the Golden Jubilee in 2002 and to recognise the outstanding contributions made to local communities by groups of volunteers. The award is equivalent to the MBE ond is the highest award that can be made to a voluntary group. Our founders Jared and Sarah received an invitotion to attend a Buckingham Palace garden porty hosted by Her Majesty The Queen i a, ond members of the royal famiLy. Jared We are so proud to receive the Queen's Award on behalf of all our volunteers who support the important work we do for patients and families touched by vascular EDS, receiving this award is a real morale booster recognising the work of the volunteers." AnnabeLle's ChaLlenge is among 27 other volunteer groups in the county to receive the award with 250 nationalLy announced on 2nd June 2018. IF, I,I;,I,I,I
NHS EDS National Diagnostic Service Ehlers Danlos Syndrome National Diagnostic Service 11 We are proud to work closely with the Ehlers-Danlos Syndrome NationaL Diagnostic SeNice, a highly specialised service commissioned by N HS England for individuals and families who ore suspected to have compLex Ehlers-Danlos Syndrome (EDS). Established in 2009 the service runs two speciaList cLinics for patients at Sheff ieLd Northern GeneraL Hospital ond the Northwick Park & St Mark's Hospitals in London. The aims of the service Correctly investigote and diagnose coses of suspected rare EDS types. DNA analysis mainly currently in Sheffield lab. Develop guidelines and pathwoys of care for the different subtypes of EDS. Provide information obout EDS for patients and their carers. Research regording rare types of EDS. They provide an excellent diagnostic service for adults ond children with suspected complex EDS and strive to incorporate new diagnostic techniques and developments in their practice. ReferraLs are occepted from NHS Consultants in Secondary or Tertiary care for both aduLts and children. The service sees patients who are suspected of having a diagnosis of classical, vascuLar or a rare type of EDS. The service WILI also see patients with a known diagnosis of classical, vascular or a rare type of EDS. Patients with hypermobile EDS or HypermobiLity Spectrum Disorder ore not seen in this clinic. The clinic does not offer management for hypermobility. Established in 2009 Sheffield & London Genetic Counselling Diagnostic Service
Financial Review The accounts for the year ending 31st March 2024 shows a surplus of £1 10,544 and totoL funds carried forword of £315,563, this incLudes a grant payment of £61.586 from The National Lottery towords the VEDS Support Programme. The fundraising by our members ond supporters hos again gone extremely well with a total voluntary income of £162,949 (up from £70,179 the previous year). We are grateful everyone who have supported us during these challenging times. Annabelle's Challenge is currentLy in a good financial position with the funds carried over to fund future research! Of the omount corried forward £182,000 is designated to research and we are pleased to confirm we have received two research proposals. Reserves Policy The trustees have reviewed the reserves of the charity. Our aim is to maintain reserves in unrestricted funds at a Level of £18,000 to cover operationol, support costs and unforeseen expenditure over at leost a 3-month period. Safeguarding Policy This policy appLies to anyone working on behalf of AnnabeLle's Challenge including senior managers, board of trustees, paid staff, voLunteers and students. to protect children and adults who receive support and access our services. to provide parents, staff and volunteers with the overarching principles thot guide our approach to child protection and safeguarding for chiLdren and adults. Privacy Policy We take privacy very seriously. For that reason, we have set out a privacy policy, so patients and families can make sure they understond how ond why we use the information they give us. ico. The charity is also registered with the Information Commissioners Office (ICO) number ZA450659. Equality & Diversity Policy Annabelle's Challenge is an equal opportunity charity taking into account the diversity within our community and our staff, members and voLunteers. We believe thot everyone should be treated equally, regardless of their religion, beliefs, age, gender, race, disobility or sexual orientation. Ann Chal belle'6 enge he Equality & Diversity Policy requires commitment from everyone within the Chority. Our Founder, Jared Griffin, is responsible for the impLementation and effective operation of this poLicy. Fundraising Promise This promise outlines the commitment made to ourdonors and the public when fundraising and we are registered with the Fundraising ReguLator. We agree to ensure our fundraising is legal, open, honest and respectful. The stondords for fundroising are set out in the Code of Fundraising Practice. FR FUNDRAISING REGULATOR
•• Blackpool Retreat Weekend We were delighted to welcome 105 of our members to the VEDS Retreat Weekend in the North of England, which took place at The CLiffs HoteL in Blackpool Friday Ist - Sunday 3rd December, 2023. 'It was so nice to have o rest, enjoy time together as a family and see and show the children they are not alone." '1 would like to say a really big heartfelt THANK YOU for such a lovely, enriching retreat weekend in Blackpool. It was so generous and kind of you. It felt strangeLy comforting being around others with a shared understanding and experience of the condition. Thank you all for organising the retreat for us all. It brought all of my family together, which doesn't happen very often and we all had a fabulous time and took away some great new memories. The retreat weekend was an all-incLusive stay at The Cliffs with lots of free time for our members to meet each other ond make life-long friends. Iij.I:
Wear something red, take a photo & share it on your social media using the hashtag REDS VEDS REDS4VEDS REDS4VEDS Day takes place on the third Friday of May with supporters and folLowers wearing red to roise awareness of vascuLar EDS across the gLobe. Using the hashtag #REDS4VEDS news feeds turned red worLwide and is now an annual awareness campaign hosted by Annabelle's ChoLlenge. Following a successfuL launch in May 2015 the annuaL campaign now raises vitaL funds towards research and supporting families touched by vascular EDS. Reds4Veds Day 19th May 2023 mLnd PIC.COLLAGE
REDS4VEDS
400 Ann Chal belle's enge How we spent money raised 100 % of all funds raised directly helps our charity to carry out its objectives for the public benefit. As a small UK charity, we do not receive any NHS funding and rely on public donations and grant funding to help us raise awareness and provide essential support to members touched by vascular EDS. We spent a totaL of £1 15,746 on charitable activities which included the cost of delivering the VEDS Support Programme. The following projects, events and operational costs include: Small Grants £723 Staff Training £786 MedicAlert memberships £1,380 Website, Telephone and Internet £2,093 Postage and stationery £2,552 Travel for awareness & education £4,619 Support Groups £4,633 CounseLling Service £6,105 Off ice costs £7,371 Retreat Weekends £21,379 Salaries incl PAYE & Pensions £62,604 Plans for Future Period We are in a strong position to further enhance the support we provide to our members touched by vascuLar EDS, over the next 12 months we aim to increose the number of support groups taking place in- person and online and host another retreat weekend in Devon. Working with The Ehlers Danlos Support UK a conference is currently being planned for 2025, our third conference for vascular EDS patients and fomiLies supported by the EDS Service. A designated fund of £182,000 for future research projects is now avaiLable, currently two research projects have been submitted to the charity for consideration with a projected start date during 2025. * Plan forVEDS Conference 2025. * Launch new publications in journals. * Update EDS Sunflower Lonyards. * Provide results of the annual members survey. * Announce new online VEDS support groups. * Increase the number of VEDS in-person support groups. * Announce new reseorch projects. * Commission new information videos through the Emergency Core Project team. * Jointly host an international symposium potient day with The Morfan Foundation. * Fundroise to increase funds designated for research. * Invest in new IT, telecoms ond cyber security. * Continue to collaborate with other charities, organisations and community groups. The Future NEXT EXIT
ANNUAL ACCOUNTS FOR YEAR ENDING 31st MARCH 2024
| Statement of Financial Activities | Notes | Unrestricted Funds |
Designated Funds |
Restricted Funds |
Total Funds |
Last Year | |||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| £ | £ | £ | £ | £ | |||||||
| Incoming Resources | |||||||||||
| Incoming resources from generated funds |
|||||||||||
| Voluntary Income (Notes 1) | 62,949.23 3,546.74 3,818.98 6,654.41 437.88 |
100,000.00 |
61,856.00 | 162,949.23 3,546.74 3,818.98 6,654.41 437.88 61,856.00 |
70,179.46 5,563.32 2,785.88 6,692.00 72,245.60 |
||||||
| Activities for generating funds | |||||||||||
| Gross Trading | |||||||||||
Gift Aid |
|||||||||||
| Interest received | |||||||||||
| Grants (Notes 2) | |||||||||||
| Total Incoming Resources | 77,407.24 7,339.92 2,190.62 45,878.67 3,442.79 |
100,000.00 |
61,856.00 69,867.40 |
239,263.24 7,339.92 2,190.62 115,746.07 3,442.79 |
157,466.26 748.26 2,373.58 117,592.19 3,366.31 |
||||||
| Resources Expended | |||||||||||
| Costs of generating funds | |||||||||||
| Expenses for fundraising activities | |||||||||||
| Gross trading payments | |||||||||||
| Charitable Activities | |||||||||||
| Grants | |||||||||||
| Governance Costs | |||||||||||
| Total Resources Expended | 58,852.00 18,555.24 51,829.38 |
100,000.00 100,000.00 |
69,867.40 (8,011.40) 53,189.55 |
128,719.40 110,543.84 205,018.93 |
124,080.34 33,385.92 171,633.01 |
||||||
| Net income for the year before transfers |
|||||||||||
| Total Funds brought forward | |||||||||||
| Total funds carried forward | 70,384.62 | 200,000.00 | 45,178.15 | 315,562.77 | 205,018.93 |
All of the charity's activities are classed as continuing.
(1) Designated funds: Research fund; either current, planned or invited 182,000.00 Operating fund 18,000.00
(2) Restricted funds: Grant - The National Lottery Community Fund 61,856.00
Benefits and payments to charity trustees and connected persons
Balance Sheet
| Fixed Assets | Notes | Unrestricted Funds |
Designated Funds |
Restricted Funds |
Total Funds | Total Funds Last Year |
|---|---|---|---|---|---|---|
| £ | £ | £ | £ | |||
| Tangible Assets | 4,829.82 | 4,829.82 | 4,829.82 3,742.11 |
|||
| Investments | - | |||||
| Total fixed assets | 4,829.82 | 4,829.82 | 4,829.82 3,742.11 |
|||
| Current Assets | ||||||
| Other debtors | - | - | - | - | - | |
| Prepayments | - | - | - | - | - | |
| Cash in Bank | ||||||
| NatWest | 57,374.23 | 150,000.00 | 39,335.18 | 246,709.41 | 246,709.41 139,255.41 |
|
| PayPal | 2,259.43 | - | - | 2,259.43 | 2,259.43 743.41 |
|
| Virgin Reserve | 5,921.14 | 50,000.00 | 5,842.97 | 61,764.11 | 61,764.11 61,278.00 |
|
| Total Current Assets | 65,554.80 | 200,000.00 | 45,178.15 | 310,732.95 | 310,732.95 201,276.82 |
|
| Current Liabilities | ||||||
| Other creditors | - | - | - | - | - | |
| Net Current Assets | 65,554.80 | 200,000.00 | 45,178.15 | 310,732.95 | 310,732.95 201,276.82 |
|
| Net Assets | 70,384.62 | 200,000.00 | 45,178.15 | 315,562.77 | 315,562.77 205,018.93 |
|
| Funds of the Charity | ||||||
| Unrestricted Funds | 70,384.62 | 70,384.62 51,829.38 |
||||
| Designated Funds | 200,000.00 | 200,000.00 100,000.00 |
||||
| Restricted Funds | 45,178.15 | 45,178.15 53.189.55 |
||||
| Total Funds | 315,562.77 | 315,562.77 205,018.93 |
||||
| Signed on behalf of all the trustees | Signature | Name | Date | |||
| David | ||||||
| Catterall | Chairperson | Chairperson 30/01/2025 |
ANNABELLE'S CHALLENGE INDEPENDENT EXAMINER'S REPORTTO THE TRUSTEES OF ANNABELLE'S CHALLENGE I report to the charity trustees on my examination of the account5 of the charity for the year ended 31 March 2024. Respertive responsibilities of trustees and examiner As the charity trustees of Annabelle's Challenge, you are responsible for the preparation of the accounts in accordance with the requirements of the Chartties Act 20111'the AcV}. I report in respect of my examination of the Annabelle's Challenge's accounts carried out under section 145 of the 2011 Act and in carryin8 Out my examination I have followed all the applicable Directions given by the Charity Commission under section 145{5){bl of the Att. Independent examlnerfs ststement I have completed my examination. I confinn that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect: l. accounting records were not kept in respect of Annabelle's Challenge as required by section 130 of the Art: or 2. the accounts do not accord with those records: or 3. the accounts do not comply with the accounting requirements concerning the form and content of accounts set out in the Charities {Accounts and Reports) Regulations 2OJ8 other than any requirement that the accounts gtve a 'true and fair view, which is not a matter considered as part of an independent examination. I have no COnrn$ and have come across no other matters in connertion with the examination to which attention should be drawn in thi5 report in order to enable a proper understsnding of the accountsto be reached. Peter Nicol FCA Independent examiner Tower House 269 Walmersley Road Bury Lancashire BL9 6NX Date: 3 January 2025
An Chal belle's enge The Queen's Award for Voluntary Service li elle'6 ••• pi CelebraLing LO yearsl Thank you! Thank you to our members, volunteers, trustees, fundraisers, and donors for continuing to support Annabelle's Challenge. FR FUNDRAISING REGULATOR