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2023-09-01-accounts

Trustee’s Annual Report for the Period

02 September 2022 to 01 September 2023

For The Mikaere Foundation

CONTENTS OF THE FINANCIAL STATEMENTS

for the Period 02 September 2022 to 01 September 2023

REFERENCE AND ADMINISTRATION DETAILS

ORGANISATION NAME

Mikaere Foundation

CHARITIES COMMISSION REFERENCE NUMBER

1200720

HMRC CHARITIES REFERENCE NUMBER

ZD09269

REGISTERED ADDRESS

15 Palmitine House 90 York Rd London SW11 3GT

TRUSTEES

CHAIR: Melanie Gedye TREASURER: Kirsty Lester SECRETARY: Sam Hulance TRUSTEE: Wendy Hulance TRUSTEE: Andy Hulance TRUSTEE: Jamie Irving TRUSTEE: Tony Collins

STRUCTURE, GOVERNANCE AND MANAGEMENT

TYPE OF GOVERNING DOCUMENT

CIO Foundation Constitution

HOW THE CHARITY IS CONSTITUTED

Charitable Incorporated Organisation (CIO) Foundation, with 7 Trustees

TRUSTEE SELECTION METHOD

Appointed by the chairperson.

ADDITIONAL GOVERNANCE INFORMATION

All Trustees give their time voluntarily and receive no remuneration or other benefits.

OBJECTIVES AND ACTIVITIES

OBJECTS OF THE CHARITY

The object of the CIO is to relieve the need by reason of ill health of persons with Nonketotic Hyperglycinemia/Glycine Encephalopathy, in particular, but not exclusively by the provision of support, advice, grants and information for such persons, their families, carers and/or those working with affected individuals.

SUMMARY OF THE MAIN ACTIVITIES UNDERTAKEN FOR THE PUBLIC BENEFIT IN RELATION TO THESE OBJECTS

In planning the strategy for the upcoming year, the trustees have kept the Charity Commission’s guidance on public benefit and our duty to the Equality Act in mind, specifically in our Trustees’ meetings and will continue to do so moving forward.

The charity has been in touch with Professor Nick Greene at UCL to understand the research happening in NKH, and the board of trustees were happy to fund NKH research with UCL. In the last year we have granted £20,000.00 towards NKH Research (and specifically, research towards gene therapy for NKH) to UCL.

We are in the process of creating an NKH Info Pack for newly diagnosed families, are working with the Patient Information Forum to get accredited with the ‘Trusted Information Creator’ mark, and are building relationships with the Metabolic Referral Service in Greater London/South England to signpost to this resource.

ADDITIONAL DETAILS OF OBJECTIVES AND ACTIVITIES

Donation Channels: we joined several donation platforms which allow our community to donate/raise funds. Specifically: Justgiving, GofundMe, Meta (Facebook/Instagram), Benevity, Paypal, Paypal Giving Fund and Give as You Live.

Partnerships: we entered into charity partnerships with The Ultra Challenge Series, Skyline and the London Landmark Half Marathon, which allow our community to raise funds for the Mikaere Foundation in exchange for a partly paid registration fee/discount.

ACHIEVEMENTS AND PERFORMANCE

SUMMARY OF THE MAIN ACHIEVEMENTS OF THE CHARITY DURING THE YEAR

Fundraising Events

A total of £23, 355.17 was raised during this financial year. This comprises both personal donations and royalties donated by the Books for Wednesdays organisation, and was split as follows:

Fundraising highlights include the NKH 100 Mile Challenge, Skydiving events by Sam Hulance and Andrew Gits, the Hot Sauce Challenge done by Bazaarvoice, and the Marathon des châteaux du Médoc, run by Gareth Humphries and friends.

Research Events

We have continued our partnership with UCl and our team under Prof Nick Greene. There have been several research updates and a family webinar. The research updates are documented at mikaerefoundation.org/research-updates.

It’s the belief of the trustrees that our goals are best served by continuing to support the work done at UCL under Prof. Nick Greene, and as such we granted £20,000.00 towards NKH Research at UCL.

FINANCIAL REVIEW

BRIEF STATEMENT OF THE CHARITIES POLICY ON RESERVES

Surplus funds are held in the charity’s bank account to meet any unforeseen expenditure, working capital and potential grants. All expenditure decisions are taken in line with the Charity’s Reserve Policy, in line with our Financial Controls Policy.

The year started with £5592.37 in the charity account. At the end of the financial year we held £7,775.04, which is £6275.04 over the reserve amount of £1500 due to the timing of several donations. This will be rectified in the next financial year.

DETAILS OF ANY FUNDS MATERIALLY IN DEFICIT

n/a.

FURTHER FINANCIAL REVIEW DETAILS

The principal sources of funds were donations and fundraising events, and across the year we raised £23,355.17.

We donated £20,000.00 towards NKH Research at UCL, with the other outgoings investing in fundraising partnerships with Skyline and the London Landmarks Half Marathon, where we expect a positive fundraising return on our investment.

Specifically:

DECLARATION

THE TRUSTEES DECLARE THEY HAVE APPROVED THE TRUSTEES REPORT ABOVE

The charitable company is entitled to exemption from audit under Section 477 of the Companies Act 2006 for the period ended 01 September 2021

The chair acknowledges her responsibilities for:

The financial statements have been prepared in accordance with the micro-entity provisions.

The financial statements were approved by the Chair on 27 February 2024 and were signed by:

Full name: M Gedye Position: Chair Date: 27.02.2024

INDEPENDENT EXAMIER’S REPORT TO THE TRUSTEES OF THE MIKAERE FOUNDATION

I report on the accounts of the charity for the year ended 01 September 2023, which are set out on pages 8 to 9.

Respective responsibilities of trustees and examiner

As the charity’s trustees you are responsible for the preparation of the accounts: you consider that the audit requirement of section 144(2) of the Charities Act 2014 (the Act) does not apply and that an independent examination is needed.

It is my responsibility to:

Basis of independent examiner’s report

My examination was carried out in accordance with the General Directions given by the Charity Commissioners. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit and consequently I do not express an audit opinion on the view given by the accounts.

Independent examiner’s statement

In connection with my examination, no matter has come to my attention:

Nicholas Lawrence ACA

61 Benskin Road Watford WD18 0HN

Date: 24/06/2024

RECEIPTS AND PAYMENTS ACCOUNTS

for the Period 02 September 2021 to 01 September 2022

Unrestricted Restricted Endowment Total Funds
Funds Funds Funds
A1 Receipts
Donations £21,532.69 - - £21,532.69
Donated Amazon Royalties £1,822.48 - - £1,822.48
Subtotal (Gross income for AR) £23,355.17 - - £23,355.17
A2 Asset and investment sales
- - - - -
Subtotal - - - -
TOTAL RECEIPTS £23,355.17 - - £23,355.17
A3 Receipts Payments
NKH Research Grants to UCL £20,000.00 - - £20,000.00
Fundraising Partnerships £1,172.50 £1,172.50
Subtotal £21,172.50 - - £21,172.50
A4 Asset and investment purchases
- - - - -
Subtotal - - - -
TOTAL PAYMENTS £21,172.50 - - £21,172.50
Net of receipts/(payments) £2,182.67 - - £2,182.67
A5 Transfers between funds - - - -
A6 Cash funds last year end £5592.37 - - £5592.37
CASH FUNDS THIS YEAR-END £7,775.04 - - £7,775.04

STATEMENT OF ASSETS AND LIABILITIES AT THE END OF THE PERIOD

for the Period 02 September 2021 to 01 September 2022

Categories Details
Unrestricted Restricted
Funds Funds
B1 Cash Funds
Cash at Bank £7,775.04 -
Total Cash Funds £7,775.04 -
(agree balances with receipts and payments account(s)) OK OK

B2 Other monetary assets

B3 Investment assets B4 Assets retained for the charity’s own use B5 Liabilities

Signed by one or two trustees on behalf of all the trustees

Full name: M Gedye Position: Chair Date: 27.02.2024