## **Trustees' Annual Report for the period**
Period start date Period end date 25 07 2022 24 07 2023
**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
**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|||
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**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||
March **2012**
**TAR**
1
**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)
How the charity is constituted
Trust
- (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)**
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
- policies and procedures adopted for the induction and training of trustees;
- the charity’s organisational 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
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:
- policy on grantmaking;
- policy programme related investment;
- contribution made by volunteers.
March **2012**
**TAR**
3
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.
March **2012**
**TAR**
4
## **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:
- 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)** V Clark **Full name(s)** Vivienne Clark **Position (eg Secretary, Chair,** Chair and Trustee **etc)**
**Date** 1 May2024
March **2012**
**TAR**
5
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
Un1rcted
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•fibI•
8wk Ch•rg
rninistr•l EJp•n•••
Webwt• Co
ar1n9 Ew•••
Olhc• Exp•n•••
Trnv•l EIF•nM•
Ixcnpbryi F•••
ACcnI9r• 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 p*ffikh
b•k•
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lon•1
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••••l b•lon
Currnnt v4lu•
Co•1 lopdoMII
B4 A•••ts r•taln•d for th•
charlty'• own u
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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 AcUntantS
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
* here brlef d•talls of
4iy Item8 that the
éxamlner wlshes to
dl3close.
IER