The Queen's Award for Voluntary Service Ann Chal belle's enge ANNUAL REPORT AND ACCOUNTS FOR THE YEAR ENDING 31st MARCH 2023 Vascular EDS Our Challenge To Find Your Cure Charity Registration No. 1157074 belle's enge Chal TheQueenSAw4rd forvoluntaryservice Structure, Governance and Management Names of Charity Trustees David Catterall DL Bonnie Jackson Andy Fish Megan Thornton-Thompson Christina Fallows IAppointed Ist Morch 20231 Clare Edge (Appointed 1st October 20231 Jack Harris (Resigned I Ith September 2023) Kote Monku (Resigned 28th September 2023) Bonnie Jackson IResigned I Ith September 2023) Charity Registration Number 1157074 Registered 16th May 2014 Registered Office Annabelle's Challenge Walshaw Park House Wolshaw Road, Bury BL81PY Independent Examiner Peter Nicol FCA Horsfield & Smith Tower House 269 Wolmersley Road, Bury BL9 6NX LIH orsfield & Smith Bankers Notwest Virgin Annabelle's Challenge gained charity Status on the 16h May 2014 and is a Charitable Incorporated Organisation (CIO) governed by its constitution dated i ith March 2014 by o 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 o majority vote. The trustees pay due regard to the Charity Commission guidance on public benefit in deciding what activities the charity should undertoke. The trustees have ossessed the major risks to which the charity is exposed and are satlsfied that systems are in place to mitigote exposure to the major risks. The charity is covered by £5,000,000 public liability a nd employers, liability insurance with Zurich. The annual report was approved by the trustees ofthe charity on 30101124 and signed on its behalf by: David Catterall DL Chairperson Annabelle's Challenge Vascular EDS Charity Annabelle's Challenge aims to promote awareness and medical research into Voscular Ehlers-Danlos Syndrome (vascular EDS). The charity wos founded in 2013 by Jared and Sarah Griff in, after their daughter Annabelle was diagnosed with vascular EDS at the age of 3. We provide support to children and adults touched by vascular ED5 IVEDSI. Vascular EDS is thought to affect around 740 people in the UK, it is a connective tissue disorder and means patients are at daily risk of their internal organs and arteries spontaneously rupturing. Voscular EDS is o life-threotening connective tissue disorder that affects all tissues, arteries and internal organs making them extremely f rogile. Patients are at risk of sudden arterial or organ rupture. Vascular EDS (previously known as Ehlers-Danlos type IVI is o rare type of Ehlers-Danlos syndromecaused by an alteration, olso known as o mutation in the COL341 gene. COL3A I gene is the instruction for making collagen type I I l a tough f ibre-like protein that makes up a third of our body protein. When this gene is altered, it couses a lack or deficiency of th is collagen making the connective tissue less effective, particularly in skin, lung, uterus, intestine and the vascular system. At present, the life span for affected individuals is a medion age of about 51 years149 for males and 53 for females) but with a very large range from l O year5 to 80 years. The prevalence is estimated 05 1150,000 to 11200,000. It is suggested 740 people in the UK havevasculor ED5. Our Objectives EDUCATION To advance the education of the general public and medical profession in all areas relating to voscular ED5. RESEARCH The relief of sickness and preseNation and protection of good health by the provision of funding for the development of research and early diognosis of vasculor ED5. SUPPORT To promote and protect the physical and good mental health of sufferers of vascular EDS, their families, and carers through the provision of financial assistonce, support, education, a nd practical advice. Our Charity Provides information, leaflets, advice and a VEDS support programme. Currently has over 370 members who have been diagnosed with the condition. Has a website, Facebook, Twitter, and Instagram page. Organises events to ra ise awareness and raise funds. Produces newsletters, emails, and updates to current members. Works closely with the N HS EDS National Diagnostic Service. Collaborates with The Ehlers-Danios Support UK charity. Raises aworeness through medio, organised events, sponsorship, and networking. Provides free MedicAlert UK membership & exclusive discounts. Has o dedicated f reephone helpline service and patient coordinators. Provides conferences and retreatweekends Hosts the annual REDS4VED5 global awareness campoign. Funds Research. Aiiil4rii¢ (Niien Achievements and Performance Most people who contact Annabeiie's Challenge require information and support. We provide first-hand experience and advice to those who need emotionol support especially with coping and adjusting to an uncertain future living with vascular EDS. The charity works closely with the EDS Nationol Diagnostic Service, o highly speciolised seNice commissioned by NHS England and receives patient referrals to enable us to SUPFOrt individuals and families touched by vascular EDS. Membership is free and continues to grow and we now support over 370 members. Our weekly e-newsletter had an open rate of 51.1%, we recognise that not all our members are on social media and will continue to use this resource to communicate with our subscribed members. Sociol media continues to grow with 6,029 Facebook, 2,886 Twitter and 1,520 Instagram followers. As a small charity for a rare genetic disorder, we need to amplify our voice and continue to work with Genetic Alliance UK and Gene People. We work with Beacon and are also proud stakeholders in the VEDS Collaborative Group in the US. The charity is an official partner with MedicAlert UK enabling us to offer free medic alert membership and discounts on medic alert jewellery exclusive to our vascular EDS members. We continue to raise awareness for research into vascular EDS and have a restricted ￿ nd a nd a designated fund available for f uture research projects. Th•ouEen5AwM larVoluntaty5ep¥l(• We ore also delighted and honoured to receive a Community Champion Award from Ehlers- Danlos Support UK. -,[[ Award ce VEDS Support Programme Our VEDS Support Progromme is ovoiloble to oll our members touched by vosculor EDS ond offers advocacy, emotional and procticol support. From the moment someonejoins Annabelle's Challenge they will hove free access to all our resources and advice.. VEDS management guidance. Emergency preparedness. Talks and support in educotional settings. Peer support 'buddy up, with other vascular EDS members. Vascular EDS Retreat Weekends, Conferences & Events. Patient Coordinator support. Freephore helpline. Online support and 1-2- I calls. Free Sunflower lanyard and EDS awareness card. Help with creating a core team. Access to research study projects & clinical trials. Access to private Facebook support groups. Ambulance Medical Marker requests. Mental Heolth First Aid support. Free MedicAlert U K, Ireland & Australia subscription plus exclusive discounts on bracelets. Regional support Groups. VEDS Steering Group The VEDS Steering Group will help to shape the future of the cha rity as it continues to grow providing support, guidance and overseeing the progress of all community-based projects including events and reseorch in the UK. The VEDS Steering Group is made up of volunteers who are directly touched by VEDS including potients, parents and carers, they are supported by genetic counsellors from the EDS National Diagnostic Service with representation from both clinics based in Sheff ield and London. Steering group aim5- Provide input based on their direct experience of VEDS. Give strotegic direction. Support the charity. Enoble more people diagnosed with VED5 to fulfil their potential by working to address issues ot the earliest possible stage through theVEDS Support Programme. The steering group usually meets at key stages during the course of a project and influences strategic decisions including reviewing and advising on VEDS research proposols. VEDS Regional Support Groups Our regionol support groups across the UK are for those who are touched by vascular EDS and oll family members ore 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. DuDdep. ,Igh Glasgo United Kingdo Our patient Coordinato￿ work closely with the volunteer area coordinators to help plan suitable venues and logistics across the U NORTHE, IRELAf4b Man Ireland '.WA' ENGL Go g￿mYmapS ¥￿T￿l The MBEfor volunteer groups 'M. •M•• Queen's Award for Voluntary Service Annabelle's Challenge are proud recipients of The Queen's Aword for Voluntary Service. The unique UK national honour wos 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 aword is equivalent to the MBE and is the highest award thot can be made to a voluntary group. Our founders Jared and Sarah received an invitation to attend a Buckingham Palace gorden party hosted by Her Majesty The Queen and members of the royal family. Jared "We are so proud to receivethe Queen's Award on behalf of all our volunteers who sUPPOrt the important work we do for patients a nd families touched by vascular EDS, receiving this award is o real morale booster recognising the work of the volunteers." Annabelle's Challenge is omong 27 other volunteer groups in the county to receive the aword with 250 nationally announced on 2nd June 2018. i,I;I'i':I', NHS EDS Notional Diognostic Service Ehlers Danlos Syndrome National Diagnostic Seryice We are proud to work closely with the Ehlers-Danlos Syndrome National Diagnostic SeNice, a highly specialised seNice commissioned by N HS England for individuab and families who are suspected to have complex Ehlers-Danlos syndrome IEDSI. Established in 2009 the service runs two specialist clinics for patients at Sheffield Northern General Hospital and the Northwick Pork & St Mark's Hospitals in London. The aims of the service Correctly investigate and diagnose cases of suspected rare EDS types. DNA analysis mainly currently in Sheffield lab. Develop guidelines and pathways of care for the different subtypes of EDS. Provide information about EDS for patients and their carers. Research regarding rare types of EDS. They provide on excellent diagnostic seNice for odults and children vvith suspected complex EDS ond strive to incorporote new diagnostic techniques and developments in their proctice. Referrals ore accepted f rom NHS Consultants in Secondary or Tertiary care for both adults and children. The service sees potients who are suspected of hoving o diagnosis of clossicol, vosculor or a rare type of EDS. The service will also see patients with a known diagnosis of classical, voscular or a raretype of EDS. Patients with hypermobile ED5 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 3 Ist March 2023 shows a surplus of £33,386 and total funds carried forward of £204,71 O. We need to ensure our reserve policy is sustainable a nd provide the required funds to provide support for patients and families, and increase designated funds for future research into vascular ED5. The ￿ndraising by our members and sUPPOrters hos gone extremely well with a total voluntary income of £70,179 and we a re grateful to all our volunteers, members, and fundraisers for supporting the charity. We are now in a strong position to fund future vital research into voscular EDS with £IOO,000 designated in reserves. Reserves Policy The trustees hove reviewed the reseNes of the charity. Our aim is to mointain reserves in unrestricted funds at a level of £18,000 to cover operational, support costs and unforeseen expenditure over at least a 6-month period. Safeguarding Policy This policy opplies to anyone working on behalf of Annabelle's Challenge including senior managers, board of trustees, wid staff, volunteers ond students. to protect children and adults who recewe support from Annabelle's Challenge. to provide porents, staff and volunteers with the overarching principles that guide our approach to child protection and safeguording for children a nd adults. Privacy Policy ico. We take privacy very seriously. For that reason, we have set out a privacy policy, so patients and families can make sure they understand how ond why we use the information they give us. The charity is atso register￿ with the Information Commissioners Office {ICOI number ZA450659. Equality & Diversity Policy Annabelie's Challenge is an equal opportunity cha rity taking into occount the diverslty within our community, staff, members and volunteers. We believe thot everyone should be treated equally, regardless of their religion, beliefs, age, gender, race, disability or sexual orientation. Ann Chal belle's enge he Equality & Diversity Policy requires commitment from everyone within the Charity. Our Founder, Jared Griffin, is responsible for the implementation and effective operotion of ths policy. Fundraising Promise This promise outlines the commitment made to our donors and the public when fundraising and we are registered with the Fundraising Regulator. We agree to ensure our f undraising is legal, open, honest ond respectful. The stondards for fundraising are set out in the Code of Fu ndraising Practice. FR FUNDRAISING REGULATOR 11 11 VEDS Conference We were delighted and super proud to have hosted VEDS Conference 2022 with Ehlers-Danlos Support UK and the EDS National Diagnostic SeNice at the Village Hotel Club Bury. 200 delegates attended including 65 VEDS children and adults for a weekend of fun, positivity and hopel Guest speakers provided updates on VEDS management, genetics, research, future clinicol trials, patient experience5 and advocacy plus the importonce of keeping mentally healthy. How we spent money raised 10096 of all funds raised directly helps our charity to carry out its objectives for the public benefit. As a smoll UK charity, we do not receive any NH5 fvnding and rely on public donotions and grant funding to help us raise awareness and provide essentiol support to fomilies touched by vascular EDS. We spent o total of £1 17,592 on charitable activities including the delivery of our VEDS Support Programme and the following projects and support costs: Staff Training £250 MedicAlert memberships £534 VEDS Support Groups £1,658 Office costs £7,491 Postage and stationery £1,814 Travel UK & International £5,947 Website, Telephone & Internet £2,093 Family Retreat Weekends £24,495 VEDS Conference £17,138 Salories including PAYE & Pensions £55,029 ## **ANNUAL ACCOUNTS FOR YEAR ENDING 31st MARCH 2023** ||**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)||||20,179.46
5,563.32
2,785.88
6,692.00
4,338.85|
50,000.00


||||70,179.46||93,530.39| ||Activities for generating funds|||||||||5,563.32||2,228.78| ||Gross Trading|||||||||2,785.88||3,108.00| ||Gift Aid|||||||||6,692.00||5,515.64| ||Grants (Notes 2)|||||||67,906.75||72,245.60||61,278.50| |||||||||||||| ||**Total Incoming Resources**||||39,559.51|50,000.00||67,906.75||157,466.26||165,661.31| |||||||||||||| ||**Resources Expended**|||||||||||| |||||||||||||| ||**Costs of generating funds**|||||||||||| |||||||||||||| ||Expenses for fundraising activities||||748.26|||||748.26||2,469.29| ||Gross trading payments||||2,373.58|||||2,373.58||3,291.64| ||Charitable Activities||||47,009.58|||70,582.61||117,592.19||53,795.62| ||Grants|||||||||||2,167.50| ||Governance Costs||||3,116.31|||250.00||3,366.31||2,702.57| |||||||||||||| ||**Total Resources Expended**||||53,247.73|||70,832.61||124,080.34||64,426.62| |||||||||||||| ||**Net income for the year before**
**transfers**||||(13,688.22)|50,000.00||(2,925.86)||33,385.92||101,234.69| |||||||||||||| ||**Total Funds brought forward**||||65,517.60|50,000.00||56,115.51||171,323.91||70,089.22| |||||||||||||| ||**_Total funds carried forward_**||||51,829.38|100,000.00||53,189.65||204,709.83||171,323.91| All of the charity's activities are classed as continuing - (1) Designated funds are allocated for Vascular EDS research either current, planned or invited. |(2)Grants:
Unrestricted funds – Jeans For Genes
Unrestricted funds – Aytu BioPharna sponsorship
Restricted funds - EDS Support UK
Restricted funds - The National Lottery Community Fund|340.00
3,998.85
8,967.75
58,939.00
72,245.60| |---|---| ## **Benefits and payments to charity trustees and connected persons** No trustees have received any reimbursed expenses or any other benefits from the charity during the year. ## **Balance Sheet** ||**Balance Sheet**|||||||||||||| |---|---|---|---|---|---|---|---|---|---|---|---|---|---|---| ||**Fixed Assets**||Notes||Unrestricted
Funds||Designated
Funds||Restricted
Funds||Total Funds||Last Year|| ||||||£||||£||£||£|| ||Tangible Assets||||3,742.11||||||3,742.11||4,201.07|| ||Investments||||||||||||-|| |||||||||||||||| ||**Total fixed assets**||||3,742.11||||||3,742.11||4,201.07|| |||||||||||||||| ||**Current Assets**|||||||||||||| |||||||||||||||| ||Other debtors||||-||-||-||-||-|| ||Prepayments||||-||-||-||-||-|| ||Cash in Bank|||||||||||||| ||NatWest||||41,908.83||50,000.00||47,346.58||139,255.41||106,476.73|| ||PayPal||||743.41||-||-||743.41||512,.31|| ||Virgin Reserve||||5,435.03||50,000.00||5,842.97||61,278.00||60,443.00|| |||||||||||||||| ||**Total Current Assets**||||48,087.27||100,000.00||53,189.55||201,276.82||167,432.04|| |||||||||||||||| ||**Current Liabilities**|||||||||||||| ||Other creditors||||-||-||-||-||-|| ||**Net Current Assets**||||48,087.27||100,000.00||53,189.55||201,276.82||167,432.04|| |||||||||||||||| ||**Net Assets**||||51,829.38||100,000.00||53,189.55||205,018.93||171,323.91|| |||||||||||||||| ||**Funds of the Charity**|||||||||||||| |||||||||||||||| ||Unrestricted Funds||||||||||151,829.38||115,208.40|| |||||||||||||||| ||Restricted Funds||||||||||53.189.55||56,115.51|| ||**_Total Funds_**||||||||||205,018.93||171,323.91|| |||||||||||||||| |||||||||||||||| ||Signed on behalf of all the trustees||||Signature||||Name||||Date|| ||||||||||David
Catterall||Chairperson|||| ||||||||||||||30/01/2024|| |||||||||||||||| |||||||||||||||| ANNABELLE'S CHALLENGE INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF ANNABELLE'S CHALLENGE I report to the charity trustees on my examination of the acwunts of the charity for the year ended 31 March 2023. Respectlve responslbilitles of trustees and examiner the charity's trustee5 of Annabelle's Challenge. you are responslble for the preparation of the accounts in accordan￿ with the requirements of the Charlties Act 20111'the ACVI. 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 carrying out my examination I have followed all the applicable Direction5 given by the Charity Commission under sectlon 14515llbl of the Art. Independent examinerfs statement I have completed my examination. I confirni that no material matters have come to my attentlon In connection with the examination givin8 me cause to believe that in any material respett.. l. accounting records were not kept in respect of Annabelle's Challenge a5 required by sectlon 130 of the Act,. or 2. the accounts do not accord with those records,. or 3. the accounts do not comply with the accounting requirements concerning the ft)rm and content of accounts set out in the Charities IAccounts and Reports) Regulations 2(KJ8 other than any requirement that the accounts give a 'true and fair view, which is not a matter considered as part of an independent examination. I have no concerns and have come acr055 no other matters in connection wtth the examination to which attentlon should be drawn in this report in order to enable a proper understsnding of the accounts to be reached. Peter Nicol FCA Independent examiner Tower House 269 Walmersley Road Bury Lanca5hire 8L9 6NX Date.. January 2024 pi Ann Chal belle's er)ge The Queen's Award forvoluntary Service Thank YOU! Thank you to our members, volunteers, trustees, fundraisers, and donors for continuing to support Annabelle's Challenge. FR FUNDRAISING REGULATOR