FNDAd ANNUAL REPORT 31st December 2022 ## **Table of Contents** ## **01** **02** Administration & Governance Our Mission **03** **04** Highlighted Support Activities Highlighted Advocacy Activities **05** **06** Highlighted Achievements Financial Review & Acknowledgements ## **Administration & Governance** Registered Charity name: FND Action Registered Charity number: 1169554 Registered address: 5a New Road Avenue, Chatham Kent, ME4 6BB Structure: Constituted as a CIO Trustees: Kim Hearne (appt: 10.2016) David Rosser (appt: 11.2021) Eric Rosser (appt: 01.2017) Timothy Nicholson (appt: 11.2021) James Shipley (appt: 11.2021) Tom Plender (appt: 08.2022) 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. Trustee selection is undertaken through consensus amongst currents trustees for roles which are required to further the charity’s objectives and activities. Trustee meetings are held periodically to discuss the structure and management of the charity. In planning activities of the charity, trustees have considered the guidance on public benefit issued by the charity commission. The relief of sickness and preservation of health of persons suffering with Functional Neurological Disorder, in particular but not exclusively by: Raising awareness of functional neurological symptoms through the provision of current information to the general public, health sector, caregivers, and those suffering from these symptoms. Promoting awareness of functional neurological symptoms through charitable events, meetings, social media, online and offline resources, information packs, leaflets, and other educational materials as required for the public benefit. Promoting ongoing research for functional neurological symptoms by encouraging participation through our website and social media, and publishing results. Annual Trustee Report: 31st December 2022 01 ## **Our Mission** ## **Peer support:** We aim to develop our website as a key resource for information, support and signposting through regular updates. We continue to provide online support groups for those diagnosed in the UK, their families and their care givers. We recognise that having the opportunity to chat to other people diagnosed will eliminate isolation, and can have a positive impact on a condition that is still little known about. Our team will also continue to provide a caring hand and experience to be able to offer one-to-one support and guidance. ## **Empowerment:** We aim to encourage and help people to achieve the best quality of life and improved wellbeing. We believe that whilst there is no magic cure, there is a lot that can be done to help towards recovery and/or management of symptoms. ## **Awareness:** We aim to do everything we can to raise awareness of FND amongst the general public, healthcare sector, service providers and other related charities. We already have a strong social media presence, and aim to build on our advocacy work within areas such as education and social care. ## **Collaborations:** We aim to continue to build on relationships with specialist health professionals, related charities and service providers. We understand that effective treatment and care of FND needs to have a holistic approach. We will also continue to assist researchers with project development and recruitment as we believe this is crucial for developing a better understanding of FND. **Our vision is to shine a light on Functional Neurological Disorder so that people diagnosed feel heard, supported and empowered.** Annual Trustee Report: 31st December 2022 02 ## **Highlighted Support Activities** FND Action continue to be a leading charity supporting and representing people living with FND in the UK. Our charity remains patient-led, and is therefore able to provide extensive knowledge of FND and recognition of people’s needs. Regular contact with leading specialists and those who treat FND, and a keen interest in research development, ensures information provided is current and accurate. ## **Supporting those diagnosed, care givers and families** ## **Providing a website for information and guidance** ## **Social prescribing & education within community sectors** We continued to provide one-to-one support and online support groups. By year end our Facebook groups had grown to 9,820 members, and we helped over 800 people directly. FND Action’s Facebook group has been a lifeline for me. I thought I was on my own with these horrible symptoms, but there is an amazing community who care about me. We continue to encourage and support people to connect with others in their area, in addition to our own own running groups. Our website continued to be a leading resource, for current information of FND and support information for those diagnosed and their caregivers. In the region of 170,000 people visited the website over the course of the year, averaging 56,000 page views per month. Visitors were predominantly in the UK, but visits have also been recorded in 84 other countries. We continue to develop the website in line with the needs of our community. We continued to expand on our advocacy work, involving connecting within the clinical and social sector, and discussing collaborations to develop educational materials for both children and students in higher education. Our #InformTheDoctor campaign has helped us connect with primary care providers and services. My Neurologist told me about the FND Action website. I didn’t have a clue what FND was, and was so helpful to be able to read about FND which I could understand. Annual Trustee Report: 31st December 2022 03 ## **Highlighted Advocacy Activities** With FND Action’s several years of the knowledge, we remain equipped with being able to identify and prioritise areas where better understanding of FND is needed among clinical settings, social care and the public. This in turn identifies critical areas across the UK that need priority focus on. During 2023/24 FND Action aim to focus on developing awareness videos and educational materials to meet the awareness need for all regions. ## **Using our social media sites to raise awareness of FND** **Assisting research development and recruitment** **Collaborations with allianced forums to be the #Voices4FND** We continued to use our social media platforms to inform on developments of FND, provide supporting information, and share posts from people in our community. At year end, our public social platforms had in excess of 13,000 followers, with amazing engagement from the public. Social media is the easiest and quickest way to get the voices of people with FND heard, and we are constantly looking at ways to reach more people. Given our knowledge of FND, and our extensive understanding of the needs of the community, we were often invited to contribute to research through PPI engagement. This acknowledgement was also recognised by being asked on several occasions to get involved with helping put together research grants. We continue to assist with recruitment for research projects through our online support groups and community connections. We continued to engage with related forums and alliances across the UK. We are members of/allied with several clinical and social forums, and had the opportunity to be able to present at various seminars and workshops, such as the FND Masterclass hosted at Kings College, London and events hosted by Medway Neurological Network. Annual Trustee Report: 31st December 2022 04 ## **Highlighted Achievements** FND Action’s achievements, since starting the first charity for FND in the UK in 2016, are measured by membership feedback, performance and success of projects. All achievements have been made possible because of the generosity of fundraisers and donors, and the time volunteers give to help the charity and the cause. Below highlights three of our achievements that have had a positive impact on the FND community. **FND Awareness Day UK - 25th March** ## **Hidden Disability Scheme** **#InformTheDoctor campaign** 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. By year end, in the region of 2,400 lanyards had been given out to people within the community, totally around 5,000 since joining the scheme in August 2021. Being part of the scheme has enabled us to be able to aid people with having the confidence of being out in public. Seizure medical alert cards also remain available. On the charity’s anniversary, the 10th October, we started a campaign to help people share current information relating to FND with their doctors. The downloadable information sheet was designed to tackle the stigma around the condition, and also inform medical professionals about the latest research. Social media continues to play the key role of the day, by sharing stories and infographics to help raise awareness of FND. I’m so happy now. I don’t go out at all. Scared in case I fall and have a seizure. I now have the confidence to go out in public. Thank you! We were amazed by the success of the campaign, particularly when we started receiving messages from all over the world. Annual Trustee Report: 31st December 2022 05 ## **Financial Review** ## Reserves: On the 31st December 2022 the sum of £53,018 was held in reserve to spend on charitable activities. The charities policy is that the reserves will not fall below £1,000 without full agreement of the board of trustees. In deficit: None. Accounts for 2022 were independently examined by a Chartered Accountant, and we remain in a strong financial position which will enable the charity to continue in achieving its goals during the coming year. ## **Acknowledgements** The generosity of our fundraisers and donors has allowed us to continue working in line with our objectives. To date the charity has not applied for grant funding. FND Action are hugely grateful to our volunteers who are able to give time to help us support others, and to drive awareness forward for this still littleknow condition. “The trustees declare that they have approved the annual report above.” Kim Hearne (Chair of Trustees) Annual Trustee Report: 31st December 2022 06 CHARITY COMM15S1 FOR ENGLAPI) APKI Recei tsand ents accounts CC16a 0l•t42 31_1>22 To Section A Receipts and payments Restrlct fund• Endowm￿￿1 nd• Total fund• Latst y••r 21 AR) 23.614 ACThln*8 EXPEPrfE•if*F¢e 11.121 6,144 3.822 io. ISuR￿E eMBERSFMP IYE8SITE OTHER liz 239 3,631 Sub toi•l W12 2JJ12 23J7F Sub tot•1 J12 2U12 23,3TI N•t ofre¢¢W(p•ynwt¥) 7J31 A6 Ca•h funth l•Bt sj I$￿23 |**Section B Statement of assets and liabilities at**
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_la4·z_| |||**KIM HEARNE**|||| ||||||| **CCXX** R2 **accounts (SS)** 13-04-23 **2** CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent ExaMine￿S Report Report to the twstee members of rNO A¢t 10*1 On accounts for the year ended Charfty no (If any) 116q.944 Set out on pages i I I report to the trustees on my examinatlon of thé accounts of the above charityllhe Trusf) for the year ended R￿ponSIbIlitIeS and As the charity trustees of th8 Trust, are responsible for the preparation basls of report of the acuunts in ac￿darIce V￿th the requirèments of the Charities Act 2011 nhe Acr). I report in respect of my examinab'on of the Trust's accounts carried out under seCt￿n 145 of the 2011 Act and in caryng out my 6xaminalion, I have followed the applicable Directions given by the Charity Commission under sedion 145(5Xb) of the ACL I have Gompleted my examination. I confim7 that no matefi81 matters have come to my attention (other than that disc105ed below ') in connection wth the examinats'on vthich gNes me cause to believe that in, any malerlal resp8cL aco)unting reo)rds ￿re not kept in accord8nce h￿th sectlon 130 of the Act or the accounts do not accord with the aco)unting records Independ•nt oxamlnerfs statement I have no concems and have ¢c¥ne a￿OSS no other matters in connectlon with the examination to wthich attention should be drawn In order to enable proper understanding of the accounts to be reached. ' Please delete Ihe words in the br8ckets rflhey do not appty. Slgned: Dato: Name". 6Lr Rol•vant profes•lonal quallfl¢atlonlsl or body (11 any): rc 4 c Flll.. ts IL-4L-¢ 4•& C4*pk*red Address: 7&r. IER October 2018 Section B Disclosure Onty complete rf the examiner needs to highlight matters of con￿rn (see CC32, Independent exarnination of tharity accounts: directions and guidance for examiners). Givg here brlef details of any Items that the examlner wlshes to dlsclo8e. IER October 2018