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2023-07-24-accounts

Trustees' Annual Report for the period

Period start date Period end date 25 07 2022 24 07 2023

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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

Registered charity number (if any) 1150542

Charity's principal address Floor 5, Amphenol Business Complex

Thanet Way Whitstable Postcode CT5 3SB

Names of the charity trustees who manage the charity

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18		 Trustee name Office (if any) Dates acted if not for whole
year		 Name of person (or body) entitled
to appoint trustee (ifany)
Vivienne Clark Chair
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
David Lawson
Jackie Imrie
Lesley Warrington

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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

How the charity is constituted

Trust

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)

You may choose to include additional information, where relevant, about:

We require all Trustees to undertake DBS checks, and to take an active role in the administration, activities and events of the CIO

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

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The following announcements were made on our website:

13 September 2022

Thanks to the National Lottery, we are delighted to confirm that the next MLD Family Funday will take place on Sunday 27 November 2022 at Twycross Zoo. We will have access to an onsite function room with buffet lunch, additional children’s entertainment and zoo admission. This event is open to All UK MLD families .

14 February 2023

The UK Newborn Screening programme desperately needs urgent revision to keep up with other Western countries, many of whom screen for considerably more diseases and have a far more streamlined up to date system, which in turn gives a far more positive outlook for children affected by these associated conditions.

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)

With this in mind, the Newborn Screening Collaborative, a collection of 13 rare disease organisations including Genetic Alliance UK, have highlighted three main priorities for 2023 which if given the correct focus will ensure we begin to get on the right track…

5 April 2023

Niamh Hitchman is planning a Skydive to raise awareness of MLD and raise funds for MLD Support Association UK. Niamh’s little brother, James, very sadly passed away with MLD some years ago, so she is keen to help support families who are suffering now and also those who have suffered in the past. Thank you so much to Niamh – your support is very much appreciated. Niamh has set up a Just Giving page.

5 April 2023

Sally Tooms is running the London Marathon for MLD Support Association UK. When she saw the TV coverage about Nala and Teddi and Gene Therapy she contacted us to ask if she could run for our Charity, to support families affected by MLD. I am sure we will all be watching her on TV on Sunday 23 April and cheering her on. We are all so grateful to her for her time and effort.

26 April 2023

Sally Tooms successfully ran the London Marathon for MLD Support Association UK. She finished in just under 5 hours – amazing! So far, she has raised £1,400 for us. We would like to say huge congratulations and many thanks for thinking of our Charity.

Additional details of objectives and activities (Optional information)

You may choose to include further statements, where relevant, about:

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Section D Achievements and performance

Summary of the main achievements of the charity during the year

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 therapies available.

The achievements have included:

Scientific and Family Conference 24-25 March 2023

The third MLD Support Association UK Scientific and Family Conference was held at The Holiday Inn in Telford. The Scientific Conference on Friday 24 March and the Family Conference on Saturday 25 March. This was followed by a Family Fun Day at The Holiday Inn – Telford on Sunday 26 March. Both Conferences were a huge success with leading clinicians and scientists working in the field of MLD attending and speaking on both days. Many MLD Families attended on the Saturday and then enjoyed the Family Fun Day on Sunday. The focus of the Conference this year was on Gene Therapy, Clinical Trials, Newborn Screening for MLD from a laboratory and family perspective, Support for MLD families, the need for MLD Centres and other Therapies for MLD sufferers.

Family Fun Days 27 November 2022 – Twycross Zoo An MLD Family Funday took place on Sunday 27 November 2022 at Twycross Zoo. We had access to an onsite function room with buffet lunch, additional children’s entertainment and zoo admission. This event is open to All UK MLD families and is free of charge.

26 March 2023 – Telford Following a successful Scientific and Family Confenrece, the next day was a Family Fun Day at The Holiday Inn – Telford on Sunday 26 March

Further details of these and other activities can be found in Section C.

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Section E Financial review

No reserves policy is required

Brief statement of the charity’s policy on reserves

Details of any funds materially in deficit

None

Further financial review details (Optional information)

You may choose to include additional information, where relevant about:

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) V Clark Full name(s) Vivienne Clark Position (eg Secretary, Chair, Chair and Trustee etc)

Date 1 May2024

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MLD Support A8•ocl•tlon UK 1160612 Recel ts and ments accounts CC16a For th• p•rlod Irom 25.07,2022 To 24.07.2023 Section A Receipts and payments Un￿1r￿cted lund• Rostrlcted fund• Endowmont lund• Tothi lund• La•1 y•ar to th• n••iMI to lh• nMr••l £ to lh• n••r••¢ £ lo th• nMr••l £ lo lh• n••rn•t £ A1 R•c•l Grnrrt• 23.C•XI 6.482 7a• 2,018 6,462 789 2,016 Fur¥Jf•l•llVJ 10,702 tot• ross income AR) A2 Asset and InvMim•nt ulm, l••• tabl•). or 32Jla 32,20• 28,173 Tot•1 r•c•lpts 32.286 32.266 26,573 A3Pa m•nt• ch•fi￿bI• 8wk Ch•rg rninistr•l￿ EJp•n••• Webwt• Co ar￿￿1n9 Ew••• Olhc• Exp•n••• Trnv•l EIF•nM• Ixcnpbryi F••• ACc￿nI9r• F••• Rwi•try of •uN•r Event co•ts 169 720 3.125 889 1,012 J83 169 71 607 0.373 1,080 102 376 366 240 3.128 1,012 083 206 700 7a0 4,877 20,761 37,01• 20,781 37.019 Sub total 11.680 A4 A•••t •nd InvMtm•ni urchA••• ••• tabl• Sub total N•t ol r•c•lpts/(yym•nts) A6 Trnn•f•r• b•tw••n lund• A8 Ca•h fund• la•t y•ar •nd Cash funds thls y••r •nd $6.234

ection B Statement of assets and Ilabilities at the end of the period Unr••trlct•d fund• io n••f••l E Restrlctod lund• lo n•aMt £ Endowmènt lund• lo n••M•l t C•t•9orl D•talla B1 Ca•h fund• HSBC Curfwt I£￿TrI 2.729 $8C D•po•rt Atte￿￿ 03.806 Total cash fund• 66.234 •ll Unrn•trlet•d lund• lo n••rMI £ RMtrlct•d fund• to nMr••i £ Endowm•nt lund• Detsiil lynd 10 pffikh b•k• D•tall• Cufrnnt v•lu• lon•1 Co•1 (optlon•D B3 Inv•8kn•nt •M•ts lund lo whkli ••••l b•lon Currnnt v4lu• Co•1 lopdoMII B4 A•••ts r•taln•d for th• charlty'• own u D•tall• Fund lo whl¢h r•l•l•• Amounl du• Ilonal Wh•n d lon•1 85 Llabllltl Slgn•d by on• or Nvo trus on bohill ol All th• Iru8t• Slgnoturn Prlni Nam• Dat• ol roval

CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Sectlon A Independent Examlner's Report Report to the tru8teesl membars of I, Iiiiiily Niini• MLD Support A880ciation UK On accounts for the year ended 241h July 2023 Charlty no (If any) 1150542 S•t out on pages CC16a 1 to 2 p•1• I report to the Iru8tee8 on my examination of the accounts of the above charity ('the Trust.) for the year ended 2410712022, Responslbllltles and A8 Ihe charity tru8tees of the Tru8t, you are responsible for the preparation ba818 of report of the accounts in accordance wlth the requiremen18 of Ihe Charlties Act 2011 ('the Act"), I report In respect of my examlnatlon of the Trust's accounts carried out under sectlon 145 of the 2011 Act and In carrying out my examinatlon, I have followed the applicable Directions given by the Charrty Commi88ion under 88Ctlon 14515)(b) of the Act. I have completed my examln8tlon. I confirm that no material matters have come to my attention (other than that disclosed below ') In connection with the examlnallon which glve8 me cause to belleve that In, any materi81 re8pect: accounting records were not kept In accordance with 88clion 130 of the Act or the account8 do not accord with the accounting records Independent oxamlneV8 Statement I have no concerns and have come across no other matter8 in connectlon wllh the examin8tlon to which attention should be drawn In order to enable proper un erstandlng of Ihe accounts to be reached. Pleas elete the words in the brackets if they do not apply. Slgnèd: Date: Name: Michael Letch & Partners LLP Relevant profo88lonal quallflcatlon{8) or body (11 any): A880ciation of Chartered Certfrfied Ac￿UntantS Addr•ss: 146 Hlgh Street Billericay Essex. CM12 9DF Sectlon 8 Disclosure Only complete If the examlner needs to highlight matter8 of concem (see CC32, Independent examlnalion of charity account8; directlon$ and guidance for examlner8). IER