KLEEFSTRA SYNDROME UK Trustees. Annual Report Letter Kleetstra Syndrome UK Charity Number- 1208059 Reportin8 Period.. 30th April 2024- 31st December 202411 year accounts) TN5tees' Annual Report for the Year Ended 31.12.2024 Charity Name: Kleefstra Syndrome UK Charlty Re8lstratSon Number:1208059 Reporting Peri¢)d: 30th April 2024- 31st December 2024 Trustees Wendy Hockln8-Chalr Appolnted a Aprll 2024 Vytautas Benanskis- Treasurèr Appoiffttèd 30 Aprll 2024 Anna Gibbs- Secretary Appointed 30, April 2024 Barbara Roberts Appolnted 3tr' April 2024 Dr Katherine Palffler Appointsd 30 April 2024 Catherlne Darlaslon Appolnted 30° Aprll 2024 - Reslgned Il. December 2024. Hannah Banileld Appolnted I" May 2024 Courtney Halllwell Appolnted I" May 2024 l. Objectlves and A¢tlvltles Kleefstra Syndrome UK wa5 established to support families and individuals affected by Kleefstra syndrome - a t7re genetic condition with complex needs. The charity aims to.. Provide information. advice and emotional support to families and carers Raise awareness among professionals and the public Facilitate connections between families throu8h events and online platforms
All charitable activitie5 are de5i8ned to further our aim of ensuring that no family faces the Kleefstra Syndrome journey alone, 2. Athlevements and Performance During this first year 05 a registered charity, our key achievements Include- Providing ongoing peer support to families vla onllne communitie5 and one-t(Fone connections Planning for our 2024 national family conference held in July 2024. Key partner in the international Kleefstra syndrome meetings. Organising local family meet-ups and accessible outings Creating online resotsros for families and professionals Strengthenlng our partnerships with researchers and clinicians 3. Flnantial RÈVIÈW The Charity's income for the year was under £25,000, derived from individual donation5 and small fundraising activiknes. Expenditure was in line with our charitable objective5, induding 5UPPQrt activities, event planning* and communications. We have set aside as designated ieserves the sum of £5,000 for the upcoming conference. No remuneration was paid to trustees. but some trustees claimed reasonable expenses in line with our financial procedures. The charivs finances were managed prudently, and we maintain sufficient reserves to meet upcoming planned activities. 4. Strurture, Governance and Managemenl Kleefstra Syndrome UK is a registered charitable trust governed by a Board of Tru5tee5. Trustees are volunteers and meet re8ularly to oversee strategyi artivitie5, and financial matters. The charity was formally registered with the Charity Commission on 30 April 2024. having previously operated as an unregistered voluntary group. 5. Publlc Benefft Stalement 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 afferted by Kleetstra Syndrome across the UK and tontrlbutes to public awareness and inclusion for people with rare condition.
KLEEFSTRA SYNDROME UK STATEMENT OF FINANCIAL A1VITIEs INCWDING INCOMEAND EXPENDITURE ACCOUNT FOR THE YEAR ENDING 31st December 2024 {peri¢xl from 30th Aprf12024- 31st December 2024} Balance at Nat West Account 30.04.2024 20535.35 Balance at Paypal 30.04.2024 Available reserves as at 30.04.24 21,108.35 INCOME Payments for Conference attendance 1,675.46 Plus SubscriptionslDonations/fundraising 1,673.76 3.586.59 24.694.94 Le55 Expendlture Fees {PPI 16.5 Zoom INWI 155.88 Markel Insuran INWI 134.40 SUMUP Payment Charges 3.71 NSPCC INWI Website Maintenance 138.24 Merchandise (Bears. pens etc.I 1.449.00 2,057.73 Less Conferen¢e Expendlture Trustees Reimbursement Accommodation INWI 238 Trustees Reimbursement travel (NW) 308.54
Wychwood park (Conference) {NWI 4,829.95 Delegates Expenses IAccommodation.Travel etc.IINWI 375.70 Wingate Special INWI 1,800.00 Merchandlse for Conference INW} 825.03 Apparel INWI 429.01 Dave Benson Phillips {NWI 787.00 11,213.23 Total expenditure paid OUL 13,270.96 11,423.98 Balance sheet. Monie5 held at Nat West 31.12.2024 10434.68 Monles held at Paypal 31.12.2024 989.30 Total monies Icash held 31.12.2024) 11,423.98 Totsl monie5 available (Reserve51 * year end 31.12.2024 IIA23.98 Deslgnated Reserves 5,(MJO. Free Re5er¥e5 6.423.98 *Designated Reserves are Set aside for the future conference