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← Annabelles Challenge

2025-03-31-accounts

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ANNUAL REPORT AND ACCOUNTS FOR THE YEAR ENDING 31[st] MARCH 2025

Vascular EDS

Our Challenge To Find Your Cure

Charity Registration No. 1157074

Structure, Governance and Management

Names of Charity Trustees David Catterall DL Andy Fish Megan-Thornton-Thompson Christina Fallows Clare Edge Charity Registration Number 1157074 Registered 16[th] May 2014 Registered Office Annabelle’s Challenge Walshaw Park House Walshaw Road, Bury BL8 1PY Independent Examiner Lee Sugden FCA Horsfield & Smith Tower House L | Chartered Accountants 269 Walmersley Road, Bury BL9 6NX Bankers NatWest Virgin

Annabelle’s Challenge gained charity status on the 16[th] May 2014 and is a Charitable Incorporated Organisation (CIO) governed by its constitution dated 11[th] 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 have assessed the major 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 22/01/2026 and signed on its behalf by:

David Catterall DL Chairperson

Annabelle’s Challenge Vascular EDS Charity

Annabelle's Challenge is the leading charity for vascular Ehlers-Danlos Syndrome (vascular 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 and Sarah Griffin shortly after their daughter Annabelle was diagnosed 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 daily risk of sudden arterial or organ rupture and it is thought to affect around 740 people in the UK.

Vascular EDS can be very variable 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 70/80+ years old).

Our Objectives

EDUCATION

To advance the education of the general public and medical profession in all areas relating to vascular EDS.

RESEARCH

The relief of sickness and preservation 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 financial 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:

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Achievements and Performance

Over the past 12 months we announced 2 new research projects, hosted a family retreat weekend in Devon and10 regional support groups. We also welcomed 71 new members representing 102 patients.

Annabelle’s Challenge now has 643 patients registered on the database across 25 countries.

It has been a busy period for the team in delivering the VEDS Support Programme. The charity supports over 502 members touched by vascular EDS, since the support programme was launched in August 2021.

We were also delighted that we hit the £1Million milestone since we began fundraising in April 2013. Thanks to our members, supporters, donors and grant funders the charity has achieved a total income of £1,003,790. This amazing milestone comes 20 months ahead of our original Vision 2025 projection.

Vision 2030

Vision 2030 is our long-term strategic plan and covers the 5-year period, 2025-2030. Launched 1st January 2025, Vision 2030 aims to further improve the quality of life for people affected by vascular EDS across our charitable objectives: Education, Research and Support.

Vision 2030 will be delivered through our already established and successful VEDS Support Programme.

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VEDS Support Programme

In August 2021 we were awarded £177,415 in National Lottery funding to support our work with individuals living with vascular EDS.

We used the funds to launch the VEDS Support Programme which includes adviceline support, delivering talks to schools, hosting regional support groups, facilitating ambulance markers and providing self-advocacy tools.

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VEDS Steering Committee & PPIE Group

The Steering Committee & PPIE Group help to shape the future of the charity as it continues to grow providing support, guidance and oversight of progress of all community based projects including events and research.

The team is made up of volunteers who are directly affected by vascular EDS including patients, parents and carers. The team also includes genetic counsellors from the NHS EDS National Diagnostic Service from Sheffield and London.

Steering Committee / PPIE Group aims:

VEDS Regional Support Groups

Our regional support groups across the UK are for those who are touched by vascular EDS and all family members are welcome to attend.

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.

Our patient coordinators work closely with the volunteer regional coordinators to help plan suitable venues and logistics across the UK.

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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 and is the highest award that can be made to a voluntary group.

Our founders Jared and Sarah received an invitation to attend a Buckingham Palace garden party hosted by Her Majesty The Queen and 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 2[nd] June 2018.

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EDS National Diagnostic Service

We are proud to work closely with the Ehlers-Danlos Syndrome National Diagnostic Service, a highly specialised service commissioned by NHS England for individuals and families who are suspected to have complex Ehlers-Danlos Syndrome (EDS).

Established in 2009 the service runs two specialist clinics for patients at Sheffield Northern General Hospital and the Northwick Park & St Mark's Hospitals in London.

The aims of the service

They provide an excellent diagnostic service for adults and children with suspected complex EDS and strive to incorporate new diagnostic techniques and developments in their practice.

Referrals are accepted from NHS Consultants in Secondary or Tertiary care for both adults and children.

Financial Review

The accounts for the year ending 31[st] March 2025 shows a deficit of £50,317 and total funds carried forward of £265,245.

The fundraising by our members and supporters has again gone extremely well with a total voluntary income of £74,221. 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 amount carried 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 operational, support costs and unforeseen expenditure over at least 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 that 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 understand how and why we use the information they give us.

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 that everyone should be treated equally, regardless of their religion, beliefs, age, gender, race, disability or sexual orientation.

The Equality & Diversity Policy requires commitment from everyone within the Charity. Our Founder, Jared Griffin, is responsible for the implementation and effective operation of this 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 fundraising is legal, open, honest and respectful. The standards for fundraising are set out in the Code of Fundraising Practice.

Exciting new VEDS lifestyle intervention programme announced

We are delighted to announce that Annabelle’s Challenge and The Ehlers-Danlos Support UK are jointly funding a new research programme together with Sheffield Hallam University for the benefit of adults living with vascular Ehlers Danlos syndrome (vEDS). For the purposes of the programme, researchers will work alongside people with vEDS, carers and healthcare professionals to develop and investigate the feasibility of a vEDS-bespoke exercise-based, lifestyle intervention. A primary aim of this research is to build a starting point for a larger body of work, creating evidence-based guidelines for exercise in adults with vEDS. This information will be shared to help people to live well with this condition.

The programme brings together key academic researchers from Sheffield Hallam University. The Principal Investigator, Professor Markos Klonizakis leads the Lifestyle, Exercise and Nutrition Improvement (LENI) research group and is joined by Ms Emily Newton, senior lecturer from the School of Sport and Physical Activity. Emily specialises in the prescription of exercise for long term conditions and is an experienced exercise professional, with many years delivering cardiac rehabilitation. LENI Research Group has extensive experience developing lifestyle interventions for people with Non-Communicable Diseases; experience that will be put in good use during this programme. They will work alongside Professor Nigel Wheeldon, Dr Glenda Sobey and Ms Jess Bowen, together with other key specialists in vascular EDS.

Dr Sobey and Ms Bowen, of the UK Ehlers-Danlos Syndrome National Diagnostic Service, acknowledge that exercise has a vital role in wellbeing for everyone, but needs careful consideration for those with vEDS, due to tissue fragility and vascular risk. Recommendations around lifestyle and exercise are an important part of our regular consultations and follow-up for individuals with vEDS. With over 250 patients with vEDS accessing the clinic in Sheffield where Dr Sobey and Ms Bowen are based, conversations about how to exercise safely happen regularly. Evidence-based guidelines will complement this wealth of clinical experience and will be a valuable resource for professionals and patients worldwide.

Jared Griffin, Founder & CEO of Annabelle’s Challenge, said quite often people with vEDS want to participate in activities that professionals would recommend against. Other people with vEDS feel worried about exercising at all. He feels that this programme is essential to help people to make informed decisions and gain a better understanding of how to exercise safely

To undertake the research, the team at Sheffield Hallam University have recruited a PhD student, Mr Ian Thistlewood, a qualified physiotherapist and personal trainer, who has a passion to ensure exercise is accessible to all, regardless of health conditions. When asked about his motivations for applying for the PhD, Ian said the project resonated with his ethos and belief that there is a lot we can do to make exercise accessible to all.

Annabelle’s Challenge announces £50,000 grant for new scientific VEDS research project

We're delighted to have reaffirmed our objective to enabling research in vascular EDS (vEDS) by awarding a £50,000.00 grant to a University of Sheffield research project ‘Elucidating functional significance of ‘Variants of Uncertain Significance’ by generating and characterising a zebrafish model for Vascular Ehlers-Danlos Syndrome.’

This project aims to investigate the genetic alterations found in patients with vascular Ehlers -Danlos syndrome (vEDS). These alterations are officially termed Variants of Uncertain Significance (VUS), as there is currently insufficient information regarding their likelihood of causing disease (pathogenic) or not.

Although the genetic heterogeneity present in Vascular Ehlers-Danlos Syndrome is well understood, the pathways linking genetic alterations and the various variants of uncertain significance to the disease phenotype remain obscure.

The primary objective is to identify and reclassify the VUS most prevalent in patients according to the criteria set forth by the Association for Clinical Genomic Science (ACGS) and the American College of Medical Genetics and Genomics (ACMG). VUS that remain significant will undergo functional studies using zebrafish, a small fish widely used in scientific research. Employing advanced techniques, the Balasubramanian group will edit the fish genome, generating a zebrafish model with mutations in the genes responsible for collagen production, like the patients with vEDS. Subsequently, they will analyse how close to vascular EDS this zebrafish model is so it provides a way into using zebrafish as a disease model to further clarify the significance of these VUS.

In addition to these functional studies, this animal model will also be suitable for drug screening and potentially for future gene therapy research.

The work is being overseen by Prof Meena Balasubramanian who is an academic clinical geneticist based in Sheffield. She has recently taken over the role of Clinical Director of Research at Sheffield Children’s Hospital.

This project was made possible thanks to donations received in memory of Rob Reyner.

Meena Balasubramanian, PI on this project said, “I am really grateful to Annabelle’s challenge for supporting this really exciting and worthwhile project on exploring VUS in vascular EDS which is a growing problem with advanced genetic testing and using zebrafish as a model to understand the underlying cause of vEDS.”

Jared Griffin, Founder & CEO “This is an exciting project and a turning point for the charity as we fund scientific research for vascular EDS. Variants of uncertain significance is a very important area of work and I am delighted this is now being researched through the University of Sheffield with Prof Balasubramanian leading the project.

REDS4VEDS

REDS4VEDS Day takes place on the third Friday of May with supporters and followers wearing red to raise 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 Challenge.

Following a successful launch in May 2015 the annual campaign now raises vital funds towards research and supporting families touched by vascular EDS.

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 £137,330 on charitable activities which included the cost of delivering the VEDS Support Programme. The following projects, events and operational costs include:

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 increase the number of support groups taking place in-person and online and host another retreat weekend in Devon.

Working with the EDS National Diagnostic Service a conference is currently being planned for May 2025, our third conference for vascular EDS patients and families.

Plan for VEDS Conference in May 2025. Launch new publications in journals. Update EDS Sunflower Lanyards. Provide results of the annual members survey. Announce new online vEDS support groups. Increase the number of vEDS in-person support groups. Announce new research projects.

Commission new information videos through the Emergency Care Project team. Jointly host an international symposium patient day with The Marfan Foundation. Fundraise to increase funds designated for research.

Invest in new IT, telecoms and cyber security.

Continue to collaborate with other charities, organisations and community groups.

ANNUAL ACCOUNTS FOR YEAR ENDING 31st MARCH 2025

Statement of Financial Activities Notes Unrestricted
Funds		 Designated
Funds		 Restricted
Funds		 Total
Funds		 Last Year
£ £ £ £ £
Incoming Resources
Voluntary Income 74,221.14 74,221.14 162,949.23 162,949.23
Activities for generating funds 1,554.75 1,554.75 3,546.74
Gross Trading 4,414.88 4,414.88 3,818.98 3,818.98
Gift Aid 9,380.60 9,380.60 6,654.41
Interest received 3,892.88 3,892.88 437.88
Grants (1) 750.00 750.00 61,856.00
Total Incoming Resources 94,214.25 94,214.25 239,263.24
Resources Expended
Expenses for fundraising activities 3.095.68 3,095.68 7,339.92
Gross trading payments 1,777.98 1,777.98 2,190.62
Charitable Activities 92,152.25 45,178.15 137,330.40 115,746.07
Governance Costs 2,327.47 2,327.47 3,442.79
Total Resources Expended 99,353.38 (45,178.15) 144,531.53 128,719.40
Net income for the year before
transfers		 (5,139.13) (45,178.15) (50,317.28) 110,543.84
Total Funds brought forward 70,384.62 200,000.00 45,178.15 315,562.77 205,018.93
Total funds carried forward (2) 65,245.49 200,000.00 - 265,245.49 315,562.77

All of the charity's activities are classed as continuing.

(1) Grant Received: Unrestricted funds - Jeans For Genes 750.00 (2) Designated funds: Research fund; either current, planned or invited 182,000.00 Operating fund 18,000.00

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 AS AT 31st MARCH 2025

Notes Unrestricted
Funds		 Designated
Funds		 Restricted
Funds		 Total
Funds		 Last Year
£ £ £ £ £
Fixed Assets
Tangible Assets 4,829.82 4,829.82 4,829.82
Investments - - - - -
Total fixed assets 4,829.82 4,829.82 4,829.82
Current Assets
Other debtors - - - - -
Prepayments - - - - -
Cash in Bank
NatWest 47,312.37 150,000.00 197,312.37 246,709.41
PayPal 366.48 366.48 2,259.43
Virgin Money Deposit Account 12,736.82 50,000.00 62,736.82 61,764.11
Total Current Assets 60,415.67 200,000.00 260,415.67 310,732.95
Current Liabilities
Other creditors
Net Current Assets 60,415.67 200,000.00 260,415.67 310,732.95
Net Assets 65,245.49 200,000.00 265,245.49 315,562.77
Funds of the Charity
Unrestricted Funds 65,245.49 70,384.62
Designated Funds 200,000.00 200,000.00
Restricted Funds - 45,178.15
Total Funds 265,245.49 315,562.77

Signed on behalf of all the trustees

…………………………………………….

David Catterall

Chairperson

Date: 22[nd] January 2026

INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES OF ANNABELLE’S CHALLENGE

I report to the charity trustees on my examination of the accounts of the charity for the year ended 31 March 2025.

Respective 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 Charities Act 2011 (‘the Act’).

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 Directions given by the Charity Commission under section 145(5)(b) of the Act.

Independent examiner’s statement

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

accounting records were not kept in respect of Annabelle’s Challenge as required by section 130 of the Act; or

the accounts do not accord with those records; or

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 2008 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 across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

...................................... Lee Sugden FCA Independent examiner

Tower House 269 Walmersley Road Bury Lancashire BL9 6NX

Date: 22 January 2026

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Thank You!

Thank you to our members, volunteers, trustees, fundraisers, and donors for continuing to support Annabelle’s Challenge.