'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 Servlrtingthe CEO and faciliLaung referrals to EDS dinjcs in SheffEld & London. l arn a150 a Mental HeBlih FirstAider accredited by MHFAE￿4n￿." As %*ll ag being In¥0￿ed 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 organi￿tIoNs 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 atw1￿1￿ Atlantic and kudi Beingat each of the events. fundrar*rs and the VEDS conferences. I tr￿Ve£een up dose rhe itnwctvEDS has 0 Individuals and f3milli￿. and fm hgnDurEd to have a tnore 5ub51anro1 rolewithin Annabelle's ChaI￿nge in helping them raise awarenegsand lund5 ro 5UPPQrt the VEEIS cryptnunity and further researih. David was made 3 Deputy Lieutenant of G￿a￿er Manchesier In March 2022. Chri5rina hasa fitx cla55 honours in Psyc￿logyand 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 Afi￿la South West South East Th•QUeh'sAw￿rd ForVol￿Trtary5Or1l(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 COn￿rn$ 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