FNDA ANNUAL REPORT 31st December 2024 ## **Table of Contents** ## **01** ## **02** Administration and Governance Vision, Mission & Values ## **03** ## **04** Highlighted Support Activities Highlighted Awareness Activities ## **05** ## **06** Highlighted Advocacy Activities Thank you - Volunteers & Fundraisers ## **07-10** Financial Reporting ## **Administration & Leadership** Registered Charity name: FND Action Registered Charity number: 1169554 Registered address: 5a New Road Avenue, Chatham Kent, ME4 6BB Trustees: Eric Rosser, James Shipley, Timothy Nicholson, Tom Plender, Richmond Stace, Lisa Dickinson The constitution was adopted on the 23th September 2016. FND Action is a Charitable Incorporated Organisation (CIO) and was registered with the Charity Commission on the 10th October 2016. ## **Welcome from our Chair and CEO** 2024 has been a year of growth, collaboration, and increased visibility for FND Action. As a patient-led charity, our mission to support individuals with Functional Neurological Disorder, their families, and caregivers remains at the heart of everything we do. From a governance perspective, we have continued to strengthen our board’s oversight and ensure that FND Action operates transparently and effectively. Our trustees remain committed to guiding the charity with sound stewardship, ensuring compliance with regulatory requirements and best practice standards. This year, we were proud to expand our advocacy and awareness efforts, including speaking at the FND Society International conference in Verona. These opportunities not only increased awareness of FND, but also ensured that the voices of our community are heard at national and international levels. On the support side, we have continued to provide accessible, evidence-informed guidance through our website, peer support programs, and community initiatives. The dedication of our volunteers and fundraisers has been vital in making this possible, and we are immensely grateful for their time, energy, and generosity. In 2025, we will continue to champion the needs of the FND community, amplify patient voices, and increase awareness at every level. With the dedication of our trustees, staff, volunteers, and supporters, we are creating a more informed, supportive, and inclusive environment for all living with FND. Thank you for your continued support. Tom Plender – Chair Kim Hearne – CEO & Founder Annual Trustee Report: 31st December 2024 01 ## **Vision, Mission & Values** ## **Vision:** To shine a light on Functional Neurological Disorder, so that people diagnosed feel heard, supported and empowered. ## **Mission:** To create a world where FND is no longer hidden or misunderstood, where all people affected receive empathy and understanding and can access the support and treatment that is right for them. ## **Empathy** We approach every person and situation with compassion and understanding. ## **Community** We welcome staff, volunteers, and supporters from all backgrounds who share in our mission. ## **Knowledge** We provide accurate information to ensure our community is always wellinformed. ## **Transparency** We are accountable to our community and ensure our resources are well-managed. ## **Support** We create safe spaces where people can share experiences and receive peer and expert support. ## **Advocacy** We work tirelessly to ensure that FND patients receive the treatment and support they deserve. Annual Trustee Report: 31st December 2024 02 ## **Highlighted Support Activities** FND Action continues to respond to the growing needs of people affected by Functional Neurological Disorder. Our patient-led structure ensures that support is grounded in lived experience and shaped by real-world challenges. From peer support and family resources to accessible online information, we remain a trusted source of help, guidance, and reassurance for the FND community. ## **Supporting People with FND, Families and Carers** ## **Website for Information and Guidance** **Hidden Disability Scheme and Seizure Alert Cards** Our support continues to grow through 1-2-1 support online groups and local communities. Our Facebook group is now the largest national online peer support group for people with FND, offering daily reassurance and connection. Alongside this, our community groups across the UK bring people together locally (currently in Kent, Essex, Lancashire and London), helping to reduce isolation and provide encouragement face-toface as well as online. Our website remains a trusted and accessible source of information about FND for patients, carers, and healthcare professionals. Tens of thousands of people accessed our resources in 2024, with visitors from across the UK and many countries worldwide. We continue to update and develop the website in line with community needs to ensure the information provided is accurate, relevant, and easy to access. We are proud to continue being part of the Hidden Disabilities Sunflower Lanyard Scheme. By the end of 2024, more than 2,200 lanyards had been distributed, providing people in the UK with greater confidence when out in public and helping to reduce isolation. Our seizure medical alert cards remain available, offering peace of mind and safety for those living with functional seizures. We are considering introducing additional aids in the near future. Annual Trustee Report: 31st December 2024 03 ## **Highlighted Awareness Activities** FND Action promotes understanding of Functional Neurological Disorder through public campaigns and education. We run awareness events, provide informative materials, and highlight the needs of the community to influence policy and practice. In addition, we nurture a supportive environment where patients and families share experiences, helping to reduce stigma and improve knowledge of FND among both the public and healthcare professionals. **Activities on social media** **FND Awareness Day UK - 25th March** ## **#InformTheDoctor campaign** We continue to use our social media platforms to share stories from people living with FND, helping to raise awareness, provide a sense of community, and celebrate lived experiences. We also platform individuals who advocate on their own channels, showing how their voices contribute to wider understanding. We highlight news articles, research updates, and educational resources, giving our followers reliable, accessible information while amplifying patient voices. The 25th March marks FND awareness day across the UK. Each year we join the charity’s FND Dimensions and FND Friends to host an online event. Social media continues to play the key role of the day, by sharing stories and infographics to help raise awareness of FND. We continue to encourage people to share accurate, up-to-date information about FND with their doctors. A 4-page downloadable information sheet provides current guidance, challenges outdated understanding, reduces stigma, and highlights the latest research for healthcare professionals. We also now send it directly on behalf of individuals with a covering letter, ensuring it reaches medical establishments across the UK to improve understanding of FND. Annual Trustee Report: 31st December 2024 04 ## **Highlighted Advocacy Activities** FND Action works to ensure that the voices of people living with FND are heard across the UK. By engaging with healthcare professionals, social care networks, and policy-makers, we highlight gaps in understanding and push for improvements in care. Our advocacy efforts, campaigns, and collaborations aim to reduce stigma, raise awareness, and create tangible change that enhances the lives of those affected by FND. ## **Neurological Alliance ‘1 in 6’ campaign** ## **International FND Society Conference, Verona** ## **Collaborations, alliances, and advocacy efforts** As a member of the Neurological Alliance, we participated in the ‘1 in 6’ campaign, advocating for better recognition and support for people with neurological conditions. We shared findings from the My Neuro Survey 2024 and engaged policymakers to highlight gaps in care and mental health support. Our involvement helps raise awareness of challenges faced by people with FND, and promotes improvement in services, care, and understanding across the UK health services. Our CEO spoke at the 5th Biennial conference of the FND Society in Verona, an international and multidisciplinary gathering of professionals dedicated to improving the diagnosis, treatment, and understanding of FND. The event brought together neurologists, psychiatrists, physiotherapists, researchers and more. These conferences provide an important opportunity to strengthen global collaboration between clinical expertise and lived experience. We continue to engage with related forums and alliances across the UK, ensuring the FND community has a strong united voice. In 2024, this also included charity representation at the international FND Society conference, alongside contributions to workshops and discussions supporting improved care and awareness. Annual Trustee Report: 31st December 2024 05 ## **Thank You - Volunteers and Fundraisers** FND Action could not deliver its services, campaigns, and support without the generosity of our fundraisers and the dedication of our volunteers. Their time, energy, and commitment help us reach more people living with FND, raise awareness of the condition, and provide essential support to patients, families, and carers across the UK. **“I wanted to raise money for FND Action so we could help as many patients, families, and carers as possible, raise and spread awareness of the condition, and contribute to the resources the charity provides to support people through a life-changing diagnosis.** **Since being involved with the charity, it has been great to work together to help as many people as possible across the whole of the UK.” ~ Jordan, Essex** Annual Trustee Report: 31st December 2024 06 CHARITY COMMISSION FOR ENGLAND AND WALES 1169554 Recei tsand ments accounts CC16a For th• p•rlod To 31M212024 Section A Receipts and payments unl￿trICted Re•trfcted Endowmont lund¥ lund• b) tr• n•amt £ ta th• nwr••t£ knth• n••rwt£ to th• n•w••t£ w•r••l£ Tol•l fund8 L•Bt y•ar A1 Roc DONAT￿1 or AR) 054 29.OS4 28,160 an A3P• m•nts ACTIVITIES EXPENSESIQFFICE STATIONARYIPOSTAGE INSURANCE MEM6ERSHIP WEBSITE CONFERENCE OPERATION￿ AIANAOEMEP OTHER 9.610 13.336 9,510 13.338 7.520 10,710 10$ 722 877 2.341 22.950 270 57,371 722 8n 2.341 472 701 1,016 13,600 Sub total 67.371 A4 A8•et and Inve•tm•nt Sub totsl 1.371 87.371 39,285 N•t ofrnce1p￿{p8yments) . A5 Tran8fern between funds A6 Cash fund8 lasl year end Cash funds thls yearend 28,31 28.317 11.135 13,S68 13,$66 41,883 CCXX R1 xcounts {SSI Annuol Trustee Report.. 31st December 2024 07 Section B Statement of assets and liabilities at the end of the period UnrHtrlcted Re8trlct•d funds funth X* no•r891 £ to nMrnBt£ Endowm•nt funda to no•rost£ C•tsgorie$ Detsll¥ B1 Ca•h fund• 11,683 PAYPAL Total eash funds 13.666 Endowment fund8 fund• fund• Dets118 lo to nMr•st 82 Oth•r mon•tsry •8•0ts Fund to whlch Curront ￿lu• Dgtallg F¥ftd tot*hkh Detall8 B4 A8••t8 rotalnod for th• ch•rlty'o own u8• Fund to ¥¥hkh Amount du• Wh•n du• D&tsll8 BS Llabllltl Sp3ned by or• or InJ8t••i on half of th• tr￿t0 Dale of rovgl Prirt Nam• ERIC ROSSER JENAY 8REH CCXX R2 •¢¢ounts ISSI 20NWd025 Annuol Trustee Report.. 31st December 2024 08 Independent examinerfs report on the accounts Section A Independent Examiner's Report Report to the trustses FND Action On accounts for the year ended 31 December 2024 Charfty no (if any 1169554 Set out on pag88 1to2 I report to the trustees on my examination of the accounts of the above charity (Ihe Trust.) for the year ended 3111212024 Respon8lbllllle8 and bas18 of report As the charity's trustees, you are responsibl8 for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 rthe A￿. I report in respect of my examination of the Trust'8 accounts carried out under ￿￿10n 145 of the 2011 Act and in carrying out my examination, I have followed all the applicab￿ Directions given by the Chanty Commission under section 145(5)(b) of the Act. Independent examlnerfs statement I have compleled my examination. I confimi that no material matters have 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 Charrties Act, or the accounts did not accord with the accounting records., or the accounts did not comply with the applicable requirements conc8ming 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 fairf view which is not a matter considered as part of an independent examination. I have no concems arKI have come across no other matters in connection with tha examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. ' He88e delete the sM)nls in the brackefs rfthey do not apply. Date: 19 September 2025 Sign•d: Name: David Ward Rolevant professional qualfficatlon(s) or body (if any): Fellow of the Institute of Chartered Accountants in England and Wales IER Oct 2018 Annuol Trustee Report.. 31st December 2024 09 Address: 2 Ingleton Close, Holmes Chapel. Crewe, Cheshire CW4 7LF Section B Disclosure Only complete if the examiner needs to highlight material matters of con￿rn (see CC32. Independent examination of charity accounts.. directions and guidance for examiners). Glve here brl•f detalls of any Items that the examlner wlshes to dlsc108e. IER Oct 2018 Annuol Trustee Report.. 31st December 2024 10