2023-09-30-accounts - Joseph's Goal

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

Trustees' Annual Report for the period

Period start date Period end date Day1 Month10 Year2022 Day30 Month09 Year2023 From To

Section A Reference and administration details

Charity name Joseph’s Goal

Other names charity is known by

Registered charity number (if any) 1151548

ered charity number (if any)	1151548
Charity's principal address	32 Charlotte Drive
	Highfield
	Wigan
	Postcode	WN3 6BF

Names of the charity trustees who manage the charity

Trustee name	Office (if any)	Dates acted if not for whole year
GregFarrimond
Mark Hayes		1stOctober 2022 to 31st July2023
Alan Houghton	Chairman
Susan Houghton
Ann Kendrick
Emma Kendrick
Norman Kendrick	Vice-Chairman
Paul Kendrick

Names of the trustees for the charity, if any, (for example, any custodian trustees)

Name Dates acted if not for whole year

March 2012

TAR

Names and addresses of advisers (Optional information)

Type of adviser	Name Address	Name Address
Finance	Gary Edgerton	Fairhurst, Douglas Bank House, Wigan Lane, Wigan
Legal	Paul Aynsley	McCarthy Bennett Holland, 26 Bridgeman Terrace, Wigan
Data Protection	Keith Golding	7 Hinds Head Avenue, Wrightington, Wigan

Name of chief executive or names of senior staff members (Optional information)

Section B Structure, governance and management

Description of the charity’s trusts

Type of governing document

Charitable Trust: Model Trust Deed

(eg. trust deed, constitution)

How the charity is constituted

A Trust consisting of 8 Trustees

(eg. trust, association, company)

Trustees are family members or professional associates appointed by the Trustee selection methods Chairman. (eg. appointed by, elected by)

Additional governance issues (Optional information)

All Trustees give their time voluntarily and receive no remuneration or You may choose to include other benefits additional information, where relevant, about:

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

Summary of the objects of the charity set out in its governing document

1) To advance the education of the public by the funding and promotion of medical and/or scientific research into Non-Ketotic Hyperglycinemia (NKH) with the aim of finding improved treatments and developing a cure for the condition and to publish the useful results arising from such research.
2) The relief of sickness and the promotion and presentation of good health by the provision of grants and/or equipment to anyone in the UK suffering from NKH.

March 2012

TAR

In planning our activities for the year, we kept in mind the Charity Commission’s guidance on public benefit at our Trustees’ meetings

We have interacted with both Professor Nick Greene, UCL, and NKH Crusaders in the USA regarding the current state and progress with the Research and this has reinforced our previous decision to channel all current funding to UCL.

Conferences

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)

A Zoom Conference was hosted jointly by Joseph’s Goal and UCL in May 2023, to which all UK NKH and all known non-UK families were invited. Nick Greene and his team presented current research updates and held a question and answer session. Feedback was vey positive.

It is likely that there will be a further Conference in Boston USA in the Spring of 2024.

Similarly the Business Expos have not taken place due to the Covid pandemic and this has removed an element of our ability to communicate with a section of the public. We would hope to resurrect these in the coming year, commencing with the Wigan Business Expo in March 2024.

Additional details of objectives and activities (Optional information)

All policies are reviewed on an annual basis. The grantmaking policy forms part of our Financial Controls package.

A significant contribution has been made by our loyal band of volunteers to the numerous Fund Raising events, Sponsored events, Monthly Lottery Draws and Charity Box proprietors, without which the Charity would not have been able to achieve so much.

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

We were supported by a number of NKH families – in particular Jack Donohoe, Daisy’s Diary, Remembering Rowan, Laura Gallagher and Eloise Latimer who all made significant contributions.

policy on grantmaking;
policy programme related investment;
contribution made by volunteers.

March 2012

TAR

Section D Achievements and performance

Fundraising Events Summary of the main A net total of £60,401 was raised during the year achievements of the charity The main events were : during the year The Legends Football Match raised £33,125 and was staged this year at the DW Stadium, home of Wigan Athletic. The Monthly Lottery now has 600 members and raised £18,271. Sponsored Events A total of £33,085 was raised during the year. The main event was the Walk4Joseph to Blackpool which raised £22,880,

Donations A total of £26,732 was received during the year and comprises both generous personal donations of £8,526 and the Charity Box collection programme of 326 in the local community which raised £18,206. Research We continue to receive 6 monthly Reports from UCL. Professor Nichola Greene and his research team at UCL use a range of different experimental models to study NKH. These include, mouse models of disease, human cell lines, and organoid models. These models are being used to evaluate current treatments and to develop and test new therapies for NKH as well as to understand the NKH disease process through a series of different studies aiming to better understand the disease mechanisms e.g. what happens in the body of affected children at the level of biochemicals, cell function and gene expression. The rationale is that by better understanding the disease we can identify targets for treatment and measure whether new treatments are beneficial. As Joseph’s mum and Trustee of Joseph’s Goal Emma Kendrick has been selected by NKH Crusaders ( a USA based NKH fundraising Foundation ) to undertake a project which will be presented to the FDA in December 2023. Each parent selected will produce a PowerPoint presentation and script to demonstrate what it is like to live with NKH and our willingness for clinical trials. This is seen as a very powerful tool to emphasise the need for new treatments and therapies for NKH. Board Matters The Financial Controls package and Data Protection issues have been reviewed and Trustees continue to receive Monthly Management Accounts. Major fundraisers also receive Monthly Reports. The Board met on 4 occasions during the year. Future Issues We have plans to review and update the website and other social media opportunities. Charities of the Year We retain the support of Nice-Pak, Arnold Clark, Visions Design, Launch Events NW, Auto Time Systems Northern and Shepherds Hall Ladies Network. Awards In October 2022 Wigan Council awarded the Charity the prestigious “Believe Star” in the Walk of Fame in Believe Square, located outside the Town Hall as a recognition of 10 years contribution to the Wigan Community, and of being the largest NKH fundraiser in the world. In December 2022 the Charity won the Pride of Wigan Award in the

March 2012

TAR

Section D Achievements and performance

Wigan Observer’s inaugural Best of Wigan Awards This is the 6[th] major award the Charity has received, significantly from 6 different bodies.

Section E Financial review

Surplus funds are held in bank to meet any unforeseen expenditure, Brief statement of the working capital and potential grants. All expenditure decisions are taken charity’s policy on reserves in line with the Charity’s Reserve Policy, a constituent part of our Financial Controls & Policy package.

Details of any funds materially in deficit

Further financial review details (Optional information)

The principal sources of funds are Fund Raising events, Sponsored You may choose to include events, Personal Donations, Charity Boxes and a Monthly Lottery. additional information, where relevant about: Key Objectives:

the charity’s principal sources of funds (including Research payments in the year totalled £130,000.
any fundraising); This takes the cumulative funds sent to Research to £1,100,000
how expenditure has and we reached the MAGIC MILLION in December 2022 . supported the key objectives of the charity; No Grants were made in the year..
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)

Full name(s) Alan Houghton

Norman Kendrick

March 2012

TAR

Position (eg Secretary, Chair, etc) Date	Chairman	Vice-Chairman
	5thDecember 2023

March 2012

TAR

Charity Name No (if any) JOSEPH'S GOAL 1151548 Receipts and payments accounts CC16a For the period Period start date Period end date To from 10/1/2022 9/30/2023

Section A Receipts and payments

Section A Receipts and payments
A1 Receipts Donations 26733 Fund RaisingEvents 80533 Sponsored Events 33085 Merchandise Sales 706 Grants Received 2500 Interest on Deposit Account 4 - - 143,561 - - Sub total - Total receipts 143,561 A3 Payments Reaearch Funding 130,000 Coat of Merchandise 296 Cost of FundraisingEvents 20,131 Cost of Sponsored Events - Administration Expenses 2,010 Publicity 2,090 Cost to collect Donations/Sponsorship 1,702 Insurance 96 - Sub total 156,325 - - Sub total - Total payments 156,325 Net of receipts/(payments) - 12,764 A5 Transfers between funds - A6 Cash funds last year end 22,350 Cash funds this year end 9,586 Unrestricted funds to the nearest £ *Sub total*(Gross income for AR) A2 Asset and investment sales, (see table). A4 Asset and investment purchases, (see table)	to the nearest £ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Restricted funds	to the nearest £ Endowment funds	Total funds to the nearest £ 26,733 80,533 33,085 706 2,500 4 - - 143,561 - - - 143,561 130,000 296 20,131 - 2,010 2,090 1,702 96 - 156,325 - - - 156,325 - 12,764 - 22,350 9,586	Last year to the nearest £
		- - - - - - - -	26,733	26089
			80,533	62935
			33,085	35401
			706	979
			2,500	-
			4	9
			-	-
			-	-
			143,561	125,413

		- - -	-
			-	-
			-	-

		-	143,561	125,413

		- - - - - - - - - -	130,000	90,000
			296	159
			20,131	17,118
			-	-
			2,010	2,167
			2,090	102
			1,702	1,623
			96	198
			-	-
			156,325	111,367

		- - -	-
			-
			-	-

		-	156,325	111,367

	-	- - - -	- 12,764	14,046
	-		-	-
	-		22,350	8,304
	-		9,586	22,350

Section B Statement of assets and liabilities at the end of the period

Categories B1 Cash funds B2 Other monetary assets B3 Investment assets B5 Liabilities B4 Assets retained for the charity’s own use Signed by one or two trustees on behalf of all the trustees	Details Cash at Bank Details Other Debtors Details Details Details Signature *Total cash funds* (agree balances with receipts and payments account(s))	to nearest £ to nearest £ 9,586 - - - - - 9,586 - OK OK to nearest £ to nearest £ 319 - - - - - - - - - - - Cost (optional) - - - - - Cost (optional) - - - - - - - - - - - - - - Print Name A HOUGHTON N KENDRICK Unrestricted funds Restricted funds Unrestricted funds Restricted funds Fund to which asset belongs Fund to which asset belongs Fund to which liability relates Amount due (optional)	to nearest £ Endowment funds
			-
			-
			-
			-
			OK
			to nearest £ Endowment funds
			-
			-
			-
			-
			-
			-
			Current value (optional)
			-
			-
			-
			-
			-
			Current value (optional)
			-
			-
			-
			-
			-
			-
			-
			-
			-
			When due (optional)






			Date of approval
		A HOUGHTON	12/5/2023
		N KENDRICK	12/5/2023

CHARITY COMMISSION FOR ENGLAND AND WALES I Independent examiner's report on the accounts Section A Independent Examiner's Report Report to the truslee members of JOSEPH'S GOAL On accounts forlhe year •nded 3010912023 Chartty no (rf any) 1151548 Set out on pages 1&2 I report to ihe trustees on my examination of the a¢Unts of th8 above charity (Ihe Trusf) for the year ended Responslbllltl•s and As th8 charity trustees of the Trust, you are resp)nsibl8 for the prgparation b¥$l$ of report of th8 accounts in accordance with the requirements of th8 Charities Act 2011 llhe Act'1. I report in respect of my examination of the Trust's accounts ¢arried out under Secti 145 of the 2011 Act and in caryin9 Out my 8xaminalion, I have followed the applicable Directions gN8n by th8 Charty Commission under section 145(5Mb) of the Act. I have mpleted my examinati. I confirm that no mat8rial matters have Come to my attention (other than that d¢sdos8d bèlow ') in connection with the examinatK)n which gives me cause to believ8 that in, any material respect: aOUnting records were not kèpt in accordance wth section 130 of theAdor the accounts do not accord with the accounting records Independent examinerfs statement I have no concems and havè come across no other matters in connection with the examinatiC to which attention should be drawn in order to enable a proper understanding of the accounts to be reached. ' Pleas8 delete the InIS in the bradfets rf they do not apply. Date: /2 Name: GARY EDGERTON Relevant professional qualification(s) or body (If any): FCS CertPFS Addross: Fairhurst, Douglas Bank House. Wigan Lane. Wigan WN12TB IER October 2018