KLEEFSTRA SYNDROME UK Trustees, Annual Report Letter Kleelstra Syndrome UK Charity Number.. 1208059 Reporting Period: 1st January 2025- 31st December 202512. year accounts) Trustees. Annual Report for the Year Ended 31.12.2025 Charfty 14ame: Kleetstra Syndrome UK Charity Registrntlon Number:1208059 Reporting Perlod: 1st January 2025- 31st December 2025 l. Objective5 and Acifvltles Kleefstra Syndrome UK was established to support familie5 and individua15 affected by Kleefstra syndrome - a rare genetic condition with complex needs. The tharity aims to.. Provide informatlon, advice and emotional support to families and carers Raise awareness among professionals and the public • Facilltate connections between familie5 through events and online platforms All charitable activities are desiBned to further our aim of ensurin8 that no family faces the Kleefstra Syndrome journey alone. 2. Achlevements and Perfomiance During this second year as a registered charity* our key achievements include: Providing ongoing peer support to famllles via online communities and one-to-one connections Planning for our 2026 national family conference to be held in July 2026. Fundraisin8 and applying for 8rants for upcoming nat5onal family conference to be held in July 2026 Key partner in the international Kleetstra syndrome meetings. Organising local family meet-ups and accessible outings Creating online resources for famllies and professionals Strengthening our partner5hip5 Wlth researchers and clinlclans
- Flnanclal Review The chafity's income for the year was under £16,(KIO, derived frorn individual donations, grants and small fundraising activities. Expenditure was in line with our charitable objetknves, Including support activities, event planning, and communications includlng expenditure relating to upcoming natlonal family conference in 2026. No remuneration was paid to trustees, but some trustees claimed reasonable expenses in line with our financial procedures. The charity's finance5 were managed prudently, and we maintsin sufficient reserves to meet upcomin8 planned activities.
- Strurture, Governance and Manaiement Kleef5trd Syndrome UK is a registed charitable trust governed by a Board of Trustees. Trustees are volunteers and meet regularly to oversee strate, activfaes. and financial matters. The charTty was formally registered with the Charity Commission on 30 Aprll 21J24. havlng previously operated a5 an unregistered voluntary group.
- Public Benefft Statement In exercising their duties, the trustees have had due regard to the Charity Commission's guidance on public benefit. The charity's work supports individuals and families affected by Kleetstra Syndrome across the UK and contributes to public awareness and inclusion for people with rare condition.
KLEEFSTRA SYNDROME UK STATEMENT OF FINANCIAL AcnvmES INCLUDING INCOME AND EXPENDITURE ACCOUNT FOR THE YEAR ENDING 31st December 2025 {perlod from 1st January 2025- 31st December 20251 Balae at Nat West Account 01.01.2025 10434.68 Balance at Paypal 01.01.2025 Available reserves as at 01.01.2025 11.423.98 INCOME Restrirted Inc(M*e: Grants io.000.00 Unrestrictsd: Subscriptions/Donations 2,528.31 15.338.96 26.762.94 Lèss Expenditure Restrkted Expendlture: 0.00 Unrestrlrted Expendtture: UnreFees IPPI 23.11 Zoom INWI 155.88 Markel Insurance INWI 134.40 Conference 2026 928.0) Website Maintenance 138.24 Apparel 16.20 Just Giving 70.00 Totsl expenditure paid out 2,011.58 24,751.36
Balance sheet a5 at 31 December 2025 UAre$tri¢tcd R¢•tri¢t¢d Total (£) Fwids (£) (£) Csh •t b8•k ald Its hand Monits held •t Yi &tWest 1{751J6 lo,)0. 24,751J6 Monie5 hdd •t PyPal o• 'rot•l casb held 1£751J6 24,75136 Reserves Position UAr¢strl¢t¢d {£) Rutricted Fu]Mls (£) Tot1 (£) Restrlctsd hnds 10.000. ile51¥ted r¢#rv¢s' s(1J00 0.0 sooo.00 UThrtthl¢t¢d frtt reseTrwes 9.7SIJ6 0.00 9,751J6 Total fuAd¥ I reseryes 14,751J6 i1.0.00 24,751.J6 Desi8nated Reserves are set aside for future Conference