## **Trustees' Annual Report for the period** Period start date Period end date 25 07 2023 24 07 2024 **From** **To** ## Section A Reference and administration details **Charity name** MLD Support Association UK **Other names charity is known by**[MLD Support Association UK 1] MLD Support UK |**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year**|**Name of person (or body) entitled**
**to appoint trustee (ifany)**| |---|---|---|---| |Jacqueline Imrie|Chair||| |Vivienne Clark|Treasurer||| |Nicola Daly|Secretary||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| |~~===~~|~~===~~|~~===~~|~~===~~| ## **Names of the trustees for the charity, if any, (for example, any custodian trustees)** |**Name**|**Dates acted if not for whole year**| |---|---| |Twila D’Cruz|| |Elizabeth Davenport|| |Daniel Erskine|| March **2012** **TAR** 1 |**Names and addresses of advisers (Optional information)**
**Type of adviser**
**Name**
**Address**|**Names and addresses of advisers (Optional information)**
**Type of adviser**
**Name**
**Address**|**Names and addresses of advisers (Optional information)**
**Type of adviser**
**Name**
**Address**| |---|---|---| |||| |||| |||| |||| |**Name of chief executive or names of senior staff members (Optional information)**||| |||| ## **Section B Structure, governance and management** ## **Description of the charity’s trusts** Charitable Incorporated Organisation Constitution Type of governing document (eg. trust deed, constitution) Trust How the charity is constituted (eg. trust, association, company) Appointed by resolution passed at a properly convened meeting of the Trustee selection methods Charity Trustees, having regard to the skills, knowledge and experience (eg. appointed by, elected by) required for the effective administration of the CIO ## **Additional governance issues (Optional information)** We require all Trustees to undertake DBS checks, and to take an active You **may choose** to include role in the administration, activities and events of the CIO. additional information, where We require all Trustees to complete a knowledge and skills form to ensure relevant, about: we have a broad knowledge base to support families and administer  activities of the CIO. - policies and procedures adopted for the induction and We collaborate with the MPS Society and Archangel, 2 charities who also training of trustees; support and advocate for families with MLD. - We ensure trustees are knowledgeable about safety and risks before any - the charity’s organisational event and risk assessment is caried out for all potential venues. - structure and any wider network with which the charity works; - relationship with any related parties; - trustees’ consideration of major risks and the system and procedures to manage them. ## **Section C Objectives and activities** The CIO has continued to spread awareness of MLD through our website and family Facebook page. The website is updated regularly to reflect information available, upcoming events and news regarding MLD and **Summary of the objects of the** therapies available. **charity set out in its governing document** March **2012** **TAR** 2 Website updates October 2023 Genomics England includes MLD on its provisional list Update on the Generation Study March 2024 Clinical Trial Update from Takeda Update from Takeda following community lobbying to get enzyme replacement for families that were on the trial. March 2024 Link to FDA announcement that gene therapy now approved in USA June 2024 Orchard Therapeutics celebrates Neonatal Screening Link to press release **Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)** ## **Additional details of objectives and activities (Optional information)** You **may choose** to include further statements, where relevant, about: - policy on grantmaking; - policy programme related investment; - contribution made by volunteers. ## Section D Achievements and performance March **2012** **TAR** 3 ## Section D Achievements and performance The CIO has continued to spread awareness of MLD through our website **Summary of the main** and family Facebook page. The website is updated regularly to reflect **achievements of the charity** information available, upcoming events and news regarding MLD and **during the year** therapies available. The achievements have included: . Once again Christmas packages were sent to all MLD families with small gifts for all the family as well as the affected young person or adult. In February 2024 a day out was organised for families at Charter House near Burnley. There is a sensory room that benefits children and affected adults and was a safe welcoming environment for families to meet and chat Advocating for new born screening on behalf of families Supporting families undergoing gene therapy in Manchester ## **Section E Financial review** March **2012** **TAR** 4 No reserves policy is required ## **Brief statement of the charity’s policy on reserves** **Details of any funds materially** None **in deficit** ## **Further financial review details (Optional information)** You **may choose** to include additional information, where relevant about: - the charity’s principal sources of funds (including any fundraising); - how expenditure has supported the key objectives of the charity; - investment policy and objectives including any ethical investment policy adopted. ## **Section F Other optional information** ## **Section G Declaration** **The trustees declare that they have approved the trustees’ report above.** **Signed on behalf of the charity’s trustees** **Signature(s)** J.Imrie **Full name(s)** Jacqueline Imrie **Position (eg Secretary, Chair,** Chair and Trustee **etc) Date** 20 May 2025 March **2012** **TAR** 5 MLD Support Association UK 1150542 Receipts and payments accounts CC16a For the period from To 25.07.2023 24.07.2024 Section A Receipts and payments Unrestricted funds Restricted funds Endowment funds Totsl funds Last year to the near¢st toth& neamt£ to the nèar•st £ to th• nearest £ tts tho neargst £ A1 Receipts Grants 22,000 11.610 1,885 22.000 11,610 1,885 23,000 6,462 789 2,016 Donation Fundraising Sub total ross income or 32,266 AR) 3S,495 35,495 A2 Asset and Investment 8ale8. (see table). Sub total Total receipts 35.495 35.495 32,266 A3Pa ments Charitable Donabons Bank Charges Acsministration ExFenses Web51te Costs Marketing Expenses Office Expenses Travel Expen Subscnpbon Fees Accountancy Fees Regis￿ of sufferer Event Costs confe￿nc* costs 12.486 134 12,486 134 661 4.099 1.056 925 169 720 3,125 859 661 4.099 1.056 925 961 1,012 $83 256 961 300 300 750 8,484 20.761 37,019 2.923 1.493 25.681 2,923 1,493 25,681 Sub total A4 Asset and investmenl purchases, see table) Sub total 25.6B1 37.019 Total payments 25,681 4.753 Net of receipts/(payments) AS Transfers between funds A6 Cash funds last year end Cash funds this year end 9.814 9.814 56,234 66.048 60.987 56.234 56.234 66,048 Unrestrlcted funds lo nèarest £ 3.103 Restricted funds to nearèst £ Endowment funds to nearest £ Categories Details B1 Cash funds HSBC Current Amjni HSBC Dercgt Ar£￿Int 62.945 Total cash funds 14ree balarK*5 rethms *d payrr*rrts (511 66,048 Unrestricted funds to Dearnst £ Restricted funds to nearest £ Endowment funds to nearest £ Details Fund to which et bo10 Curr•nt value tional Details Cost loptionall B3 Investment assets Fund to which asset belon Current value onal Details Cost loptionall B4 Assets ￿taIned for the charity's own use Fund to whlch lates Amount du• tional Whftn dug tional Details B5 Liabilities Swjned by one or trustees on behaw of all the trLSStees Date of roval Signature Print Name Je[Cthv￿ Ifi61¢ IV I L¥AI* CLrt(U( 20"SEJ 13loS CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report Report to the trusteesl members of MLD Support Association UK On accounts for the year ended 24th July 2024 Charity no {if any) 1150542 Set out on pages CC16a 1 to 2 lip1)*m￿l io inrJiJdp. Ihe. Daoe nunibers ol additional shee..i', I report to the trustees on my examination of the accounts of the above charity ('the Trust") for the year ended 2410712024. Responsibilities and As the charity trustees of the Trust, you are responsible for the preparation basis of report of the accounts in accordance with the requirements of the Charities Act 2011 ('the Act.). I report in respect of my examination of the Trust's accounts carried out under section 145 of the 2011 Act and in carying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act. I have completed my examination. I confirm that no material matters have come to my attention (other than that disclosed below ") in connection with the examination which gives me cause to believe that in, any material respect: accounting records were not kept in accordance with section 130 of the Act or the accounts do not accord with the accounting records Independent examiner's ststsment I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable proper understanding of the accounts to be reached. Please delete the words in the brackets if they do not apply. Signed: Date: Name: Michael Letch & Partners LLP Relevant professlonal qualification(s) or body (if any): Association of Chartered Certified Accountants Address: 146 High Street Billericay Essex, CM12 9DF Section B Disclosure Only complete if the examiner needs to highlight matters of concern (see CC32, Independent examination of charity accounts.. directions and guidance for examiners). IER