2024-03-31-accounts - Pallister-Killian Syndrome UK

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PALLISTER-KILLIAN SYNDROME UK

Report and accounts

for the year ended

31-Mar-24

Registered Charity Number 1201662

PALLISTER-KILLIAN SYNDROME UK

Reference & Administration details YEAR ENDED 31 MARCH 2024 Registered Charity Number 1201662

Reference & Administration details

Pallister-Killian Syndrome UK is a Charitable Incorporated Organisation Charity Number 1201662 Companies House Number CE031193 Registered Office 10 Sheepfold Lane Amersham Bucks HP7 9EL Email Info@pksuk.org

Trustees

Elizabeth Patterson Emma Caple Natalie Slayford Kerry Travis

PALLISTER-KILLIAN SYNDROME UK

CONTENTS YEAR ENDED 31 MARCH 2024 Registered Charity Number 1201662

Trustees annual Report 1-2 Statement of financial Activity 3 Balance Sheet 4 Accounting Policies 5 Notes to the accounts 6-8

PKS UK- Trustees’ Annual Report 2023-2024

Reporting Period: 20 January 2023 to 31 March 2024 (first year of operation) Charity name: Pallister Killian UK (PKS UK)

Charity registration number: 1201662

Charity address: 10 Sheepfold Lane, HP7 9EL

Objectives: PKS UK works to relive the need and protect the health of those impacted by PKS and their families for the public benefit by:

Working to improve the understanding and knowledge of PKS amongst the public.
Providing financial support to further advance clinical research into PKS .

Our primary aims are:

Support- We help support people with Pallister-Killian Syndrome and their families and carers. We are also able to provide information to professionals working with a person with PKS who may have met very few or no other individuals with PKS in their professional career.
Education- We aim to educate and raise awareness of this rare neurological condition and the issues that surround it. As with many such conditions, PKS is not just about a simple diagnosis, but requires parents and carers to adapt as situations change and the individual grows older.
Research- We aim to assist organisations and individuals in the UK and overseas in carrying out research into PKS and its many related areas.

2023-24 Performance & Activities: The year 2023-24 was the first year of PKS UK’s existence. During this first year the focus was on setting up the charity, in fundraising and in ensuring that there was public awareness of the charity and of PKS as a rare syndrome. Key activities in 2023-24 include:

Designing, developing and launching the PKS UK website- www.pksuk.org
Designing and writing a PKS UK leaflet and public facing Facebook page.
Fundraising to build up the charities reserves to enable support for medical research. We are grateful to all those who have financially supported PKS UK. In April 2023 we held our first “PKS UK Walk and Roll” at Rickmansworth Aquadrome where we also handed out leaflets to the general public about PKS.
Held an online seminar with Dr Moira Blyth, author of the 2015 UK research into PKS to share the key findings of this research.
In July 2023 we held our first PKS Medical Conference in Birmingham which was attended by a number of medical professionals as well as families impacted by PKS.
Supported research being carried out by Cerebra UK into developmental delays- to ensure that a PKS cohort could be included in the research.
Started to build up connections with the UK and international medical community with an interest in PKS including with the University of Leeds Medical School and the University of Bologna Medical School.

Governance: PKS UK is constituted as a Charitable Incorporated Organisation (CIO) with provisions for 4 trustees. Trustees meet at least quarterly and communicate on a more regular basis electronically. At these meetings, the trustees set the strategy and activities for PKS UK. Trustees are appointed for 2, 3 or 4 years and can put themselves forward for re-appointment at the end of their term. Trustee re-appointments and new trustees are agreed on by existing trustees and should have a connection relevant to PKS UK- either as a parent or carer or as a professional with relevant expertise. Trustees are aware of and understand the

Charity Commission guidance on public benefit. The charity works closely with PKS Italia and PKS Kids based in the USA, sharing information and exploring potential partnerships to further our common goals of supporting medical research into PKS.

In May 2023, Emma Caple was appointed as a trustee of PKS UK for 3 years (joining the 3 founding trustees Elizabeth Patterson, Natalie Slayford and Kerry Travis).

PKS UK has no paid employees and relies on the voluntary time of its trustees and wider volunteers. We are very grateful to all those who volunteered their time to support PKS UK in 2023-24, in particular Peter Anderson for his work to develop the PKS UK website and Tim Patterson for his support with the PKS UK accounts.

PKS UK Trustees:

Elizabeth Patterson (Chair) Emma Caple Natalie Slayford Kerry Travis

Declarations:

The trustees declare that they have approved the trustee’s report above.

Signed on behalf of the charity’s trustees:

Elizabeth Patterson (PKS UK Chair)

22/12/2024

PALLISTER-KILLIAN SYNDROME UK BALANCE SHEET YEAR ENDED 31 MARCH 2024 Registered Charity Number 1201662

Unrestricted funds £	Restricted income funds £	Total funds £
7,048	-	7,048
-	-	-
-	-	-
-	-	-
-	-	-
-	-	-
7,048	-	7,048

-	-	-
2,397	-	2,397
-	-	-
-	-	-
2,397	-	2,397

4,651	-	4,651
-	-	-
4,651	-	4,651
-	-	-
-	-	-

-	-	-
-	-	-
4,651	-	4,651

1,501	-	1,501
6,152	-	6,152

PALLISTER-KILLIAN SYNDROME UK STATEMENT OF FINANCIAL ACTIVITY PERIOD ENDED 31 MARCH 2024 Registered Charity Number 1201662

Unrestricted funds £	Restricted income funds £	Endowment funds £	Total this year £
-	-	-	-
-	-	-	-
-	-	-	-
-	-	-	-
-	-	-	-

-	-	-	-
-	-	-	-
-	-	-	-
6,152	-	-	6,152
6,152	-	-	6,152

-	-	-	-

6,152	-	-	6,152

6,152	-	-	6,152

-	-	-	-
-	-	-	-

6,152	-	-	6,152

-			- - 6,152 -
	-	-
6,152

6,152	-	-	6,152

		ELIZABETH PATTERSON
		05/12/2024

PALLISTER-KILLIAN SYNDROME UK NOTES TO THE FINANCIAL STATEMENTS PERIOD ENDED 31 MARCH 2024 Registered Charity Number 1201662

Note 1 Basis of preparation

1.1 Basis of accounting

These accounts have been prepared under the historical cost convention with items recognised at cost or transaction value unless otherwise stated in the relevant note(s) to these accounts.

The accounts have been prepared in accordance with:

the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) issued on 16 July 2014

and with the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102) and with the Charities Act 2011.

The charity constitutes a public benefit entity as defined by FRS 102.

1.2 Going concern

Based on the level of reserves, the Trustees have no uncertainties as to the charity's ability to continue as a going

Note 2 Accounting policies

2.2 INCOME

Recognition of These are included in the Statement of Financial Activities (SoFA) when: income

the charity becomes entitled to the resources;
it is more likely than not that the trustees will receive the resources; and
the monetary value can be measured with sufficient reliability.

There has been no offsetting of assets and liabilities, or income and expenses, unless required or Offsetting permitted by the FRS 102 SORP or FRS 102.

Grants and Grants and donations are only included in the SoFA when the general income recognition criteria are met donations (5.10 to 5.12 FRS102 SORP).

In the case of performance related grants, income must only be recognised to the extent that the charity has provided the specified goods or services as entitlement to the grant only occurs when the performance related conditions are met (5.16 FRS 102 SORP).

Legacies Legacies are included in the SOFA when receipt is probable, that is, when there has been grant of probate, the executors have established that there are sufficient assets in the estate and any conditions attached to the legacy are either within the control of the charity or have been met.

Government grants

The charity has received government grants in the reporting period

Tax reclaims on Gift Aid receivable is included in income when there is a valid declaration from the donor. Any Gift Aid donations and amount recovered on a donation is considered to be part of that gift and is treated as an addition to the gifts same fund as the initial donation unless the donor or the terms of the appeal have specified otherwise.

Contractual income and This is only included in the SoFA once the charity has provided the related goods or services or met the performance performance related conditions. related grants

PALLISTER-KILLIAN SYNDROME UK Notes to the financial Statements continued PERIOD ENDED 31 MARCH 2024 Registered Charity Number 1201662

Donated services and facilities

Volunteer help

Donated services and facilities are included in the SOFA when received at the value of the gift to the charity provided the value of the gift can be measured reliably.

Donated services and facilities that are consumed immediately are recognised as income with an equivalent amount recognised as an expense under the appropriate heading in the SOFA. The value of any voluntary help received is not included in the accounts but is described in the trustees’ annual report.

Income from interest, This is included in the accounts when receipt is probable and the amount receivable can be measured royalties and reliably. dividends

2.3 EXPENDITURE AND

Liability Liabilities are recognised where it is more likely than not that there is a legal or constructive obligation recognition committing the charity to pay out resources and the amount of the obligation can be measured with reasonable certainty.

Governance and support costs

Support costs have been allocated between governance costs and other support. Governance costs comprise all costs involving public accountability of the charity and its compliance with regulation and good practice.

Support costs include central functions and have been allocated to activity cost categories on a basis consistent with the use of resources, eg allocating property costs by floor areas, or per capita, staff costs by the time spent and other costs by their usage.

Deferred income

No material item of deferred income has been included in the accounts.

Creditors

The charity has creditors which are measured at settlement amounts less any trade discounts

Provisions for A liability is measured on recognition at its historical cost and then subsequently measured at the best liabilities estimate of the amount required to settle the obligation at the reporting date Basic financial The charity accounts for basic financial instruments on initial recognition as per paragraph 11.7 FRS102 instruments SORP. Subsequent measurement is as per paragraphs 11.17 to 11.19, FRS102 SORP.

2.4 ASSETS

Tangible fixed assets for use by charity

These are capitalised if they can be used for more than one year, and cost at least

They are valued at cost.

Investments

Fixed asset investments in quoted shares, traded bonds and similar investments are valued at initially at cost and subsequently at fair value (their market value) at the year end. The same treatment is applied to Investments held for resale or pending their sale and cash and cash equivalents with a maturity date of less than 1 year are treated as current asset investments

Debtors (including trade debtors and loans receivable) are measured on initial recognition at settlement Debtors amount after any trade discounts or amount advanced by the charity. Subsequently, they are measured at the cash or other consideration expected to be received.

The charity has has investments which it holds for resale or pending their sale and cash and cash Current asset equivalents with a maturity date less than one year. These include cash on deposit and cash equivalents investments with a maturity date of less than one year held for investment purposes rather than to meet short term cash commitments as they fall due.

They are valued at fair value

PALLISTER-KILLIAN SYNDROME UK Notes to the financial Statements continued PERIOD ENDED 31 MARCH 2024 Registered Charity Number 1201662

Note 3 Analysis of expenditure

This year

Analysis Expenditure on raising funds:	Unrestricted funds	Restricted income funds	Endowment funds	Total funds £
Staging fundraising and promotional events	-	-	-	-
		-	-	-
Total expenditure on raising funds Expenditure on charitable activities:	-	-	-	-

Annual conference	1,859	-	-	1,859
	-	-	-	-
Total expenditure on charitable activities Other	1,859	-	-	1,859

Support Costs	538	-	-	538
	-	-	-	-
	-	-	-	-
	-	-	-	-
Total other expenditure TOTAL EXPENDITURE	538	-	-	538
	2,397	-	-	2,397

PALLISTER-KILLIAN SYNDROME UK Notes to the financial Statements continued PERIOD ENDED 31 MARCH 2024

Registered Charity Number 1201662

Note 4 Support Costs

This year

This year
Support cost	Raising funds	Research	Education	Support & raising awareness	Grand total	Basis of allocation
	£	£	£	£	£	(Describe method)
Governance	-	-	-	-	-
Website	-	-	-	299	299
Bank charges	-	-	-	239	239
	-	-	-	-	-
Other	-	-	-	-	-
Total	-	-	-	538	538

Support costs are split upon the basis of the activity the charitable activity they are most aligned with. General costs are split evenly being raising funds and awareness of the charity whilst it is in its infancy.