2023-04-30-accounts - The Hereditary Spastic Paraplegia Support Group

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

Charity name: Hereditary Spastic Paraplegia Support Group Charity no: 1181539 18 Lodmoor Avenue, Weymouth DT3 5AF

Trustees: Shanake Amarasinghe, Emily Bell, Mike Cain, Dave Harris, Adam Lawrence, John Mason, Mitesh Patel, Juan Vasquez Ruiz

Trustees’ Report, Year ending 30th April 2023 Structure and Management

The charity is governed and administered by a committee of 8 volunteer trustees. The trustees consider that all actions taken during the year were in accordance with the constitution. The trustees meet several times a year or correspond by email to discuss the activities of the group and its position, make decisions on activities and expenditure. All meetings during the year were by Zoom.

Two members were invited to attend trustee meetings and were co-opted as trustees: Shanake Amarasinghe in November 2022 and Juan Vasquez Ruiz in January 2023. They will stand for election at the AGM in July.

Activities and Objectives

The group’s mission statement is:

People with Hereditary Spastic Paraplegia (HSP), their families and carers are at the heart of everything we do.

Our information and support helps improve the quality of life for those affected by HSP.
Our friendly support community helps with sharing ideas and reducing feelings of isolation.
We support research into HSP, including developing treatments and improving understanding.

The mission statement articulates how the Group fulfils its charitable objects which are concerned with promoting and protecting physical and mental health, and advancing education.

The Group provides a friendly supportive community with various ways for members to keep upto-date and communicate with each other:

An Annual General Meeting featuring presentations from HSP specialists and other relevant individuals
Regional meetings are regularly held around the country aiming to reduce the isolation of members
A Newsletter is published 2-3 times a year
A website and social media channels provide information and allow discussions on relevant topics

The Group provides various ways to support members and promote understanding of and research into HSP:

Supportive community grants are available to members to help with the purchase of mobility aids or other equipment
Grants are available to support projects researching aspects of HSP

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 The group is involved with relevant umbrella organisations to help promote HSP

Achievements and Performance

Although activities this year have again been constrained by the restrictions imposed as a result of coronavirus, the group has worked on its public benefits with the purposes of reducing isolation and keeping people informed and involved:

The 2022 AGM was held virtually, via the Zoom platform
The presentations usually made at the AGM were also held virtually over summer of 2022
Recordings of the AGM and the presentations were posted to a YouTube channel for the group so that members or the public can view them at any time
Meetings during the year were held via Zoom and face to face:
12 national meetings (Zoom)
10 regional meetings (face to face)
2 focussed meetings (families. SPG11, SPG15) by Zoom
2 editions of the newsletter were produced (May 22, Oct 22)
Social media groups for those with HSP and their carers were supported
2 awards were made at the 2022 AGM recognising contributions made by individuals to help raise the profile of HSP and for fundraising.
The group agreed to continue annual contributions to an international prize for research into treatments and therapy for those with HSP
Trustees have attended a number of relevant meetings and have reported their observations to members

Home nation meetings (WAL and SCO) have lapsed with a shortage of volunteers able to host them.

Money is raised from subscriptions and fund-raising activities undertaken by members and friends. Fund raising has not recovered to pre=pandemic levels.

No new research applications were received this year. Two research grants are still active, one in Exeter and one in Sheffield.

Nine (9) members applied for member grants, with the aim of purchasing mobility aids. In total £6,409 was approved for them.

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Financial Review

Income: £ 19,427.45 (last year £ 32,742.21) Expenditure: £ 26,468.00 (last year £ 29,591.97)

There was a deficit of £7,040.55 for the year (last year a surplus of £ 3,150.24).

At the end of the financial year (30/4/2023) the Group has net assets of £125,325.43 held entirely in its bank accounts. These assets were held in reserve to meet benefits, research funding and contingencies in future years.

All monies raised for research (£4,107.51 with collection costs of £113.68) were assigned to a restricted account. The account was used as part payment for research grants which totalled £15,000.

The Group has offered to fund research at Exeter and Sheffield Universities with offers to support research at a rate between £10,000 and £15,000 per year (depending on the availability of funds) for the 4 years of a PhD studentship at each university. Three (3) payments totalling £45,000 have been made to date to Exeter. We are still waiting for a formal proposal from Sheffield before making payments.

There are no other outstanding liabilities. Fundraising comes mainly from outdoor events which have not recovered to levels before the coronavirus epidemic. However there are sufficient funds to enable the Group to operate.

The Trustees consider that the Group is financially sound.

The Trustees consider a reserve of around £15,000 should be held to meet contingencies and that there are significant funds beyond that figure.

The accounts have been prepared in accordance with the Charity Commissioners guidelines and with regard to the guidelines on public benefit.

John Mason Treasurer

Adam Lawrence Chair

Date: 30 May 2023

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HSP Support Group	HSP Support Group	HSP Support Group	Charity No (if any)	1181539
Annual accounts for theperiod
Period start date	5/1/2022	To	Period end date	4/30/2023

Section A Statement of financial activities

Total funds £ £ £ £ £ F01 F02 F03 F04 F05 Unrestricted funds Restricted income funds Endowment funds Prior year funds	Total funds £ £ £ £ £ F01 F02 F03 F04 F05 Unrestricted funds Restricted income funds Endowment funds Prior year funds	Total funds £ £ £ £ £ F01 F02 F03 F04 F05 Unrestricted funds Restricted income funds Endowment funds Prior year funds	Total funds £ £ £ £ £ F01 F02 F03 F04 F05 Unrestricted funds Restricted income funds Endowment funds Prior year funds	Total funds £ £ £ £ £ F01 F02 F03 F04 F05 Unrestricted funds Restricted income funds Endowment funds Prior year funds
10,504.02	483.54	0.00	10,987.56	12,131.84
4,815.92	3,623.97	0.00	8,439.89	2,113.01
		0.00
0.00	0.00		0.00	0.00
0.00	0.00	0.00	0.00	0.00
0.00	0.00	0.00	0.00	0.00
15,319.94	4,107.51	0.00	19,427.45	14,244.85

111.93	113.68	0.00	225.61	120.92
9,523.51	15,000.00	0.00	24,523.51	19,284.48
0.00	0.00	0.00	0.00	0.00
1,718.88	0.00	0.00	1,718.88	2,584.12
11,354.32	15,113.68	0.00	26,468.00	21,989.52

3,965.62	-11,006.17	0.00	-7,040.55	-7,744.67
0.00	0.00	0.00	0.00	0.00
3,965.62	-11,006.17	0.00	-7,040.55	-7,744.67
0.00	0.00	0.00	0.00	0.00
-11,006.17	11,006.17	0.00	0.00	0.00

0.00	0.00	0.00	0.00	0.00
0.00	0.00	0.00	0.00	0.00
-7,040.55	0.00	0.00	-7,040.55	6,597.00

132,365.98	0.00	0.00	132,365.98
125,325.43	0.00	0.00	125,325.43

Section B Balance sheet

Guidance Notes Fixed assets Intangible assets (Note 15) B01 Tangible assets (Note 14) B02 Heritage assets (Note 16) B03 Investments (Note 17) B04 *Total fixed assets* B05 Current assets Stocks (Note 18) B06 Debtors (Note 19) B07 Investments (Note 17.4) B08 Cash at bank and in hand (Note 24) B09 *Total current assets* B10 B11 *Net current assets/(liabilities)* B12 *Total assets less current liabilities* B13 B14 Provisions for liabilities B15 *Total net assets or liabilities* B16 Funds of the Charity Endowment funds (Note 27) B17 B18 Unrestricted funds B19 Revaluation reserve B20 *Total funds* B21 Signature Creditors: amounts falling due within one year (Note 20) Creditors: amounts falling due after one year (Note 20) Restricted income funds (Note 27) Signed by one or two trustees on behalf of all the trustees	£ £ F01 F02 Unrestricted funds Restricted income funds	£ £ F01 F02 Unrestricted funds Restricted income funds	£ £ F03 F04 Endowme nt funds Total this year	£ £ F03 F04 Endowme nt funds Total this year	£ F05 Total last year
	-	-	-	-	-
	-	-	-	-	-
	-	-	-	-	-
	-	-	-	-	-
	-	-	-	-	-

	-	-	-	-	-
	-	-	-	-	600
	-	-	-	-	-
	125,325		-	125,325	131,765.98
	125,325	-	-	125,325	132,365.98

	-	-	-	-	-

	125,325	-	-	125,325	132,366

	125,325	-	-	125,325	132,366

	-	-	-	-	-
	-	-	-	-	-

	125,325	-	-	125,325	132,366

	- -			- - 125,325 -	-
		-	-		-
	125,325				132,366

	125,325	-	-	125,325	132,366

Signature			Print Name		Date of approval dd/mm/yyyy
			JR Mason		5/30/2023

Section C Notes to the accounts

Note 1 Basis of preparation

This section should be completed by all charities .

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 • and with ü 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 ü 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.*

ü

-Tick as appropriate

1.2 Going concern

If there are material uncertainties related to events or conditions that cast significant doubt on the charity's ability to continue as a going concern, please provide the following details or state "Not applicable", if appropriate:

An explanation as to those factors that support the conclusion that the charity is a going concern;

Not applicable

Disclosure of any uncertainties that make the Not applicable going concern assumption doubtful; Where accounts are not prepared on a going Not applicable concern basis, please disclose this fact together with the basis on which the trustees prepared the accounts and the reason why the charity is not regarded as a going concern.

1.3 Change of accounting policy

The accounts present a true and fair view and the accounting policies adopted are those outlined in note 2.2.

Yes No *Please disclose*	ü	* -Tick as appropriate	* -Tick as appropriate
	ü
	:
*(i) the nature of*	*the chang*	*e in accounting policy;*	No changes have been made
*(ii) the reasons* *provides more r* *and*	*why appl* *eliable an*	*ying the new accounting policy* *d more relevant information;*
*(iii) the amount* *the current peri* *aggregate amou* *before those pr*	*of the adj* *od, each* *nt of the* *esented, 3*	*ustment for each line affected in* *prior period presented and the* *adjustment relating to periods* *.44 FRS 102 SORP.*

1.4 Changes to accounting estimates

No changes to accounting estimates have occurred in the reporting period (3.46 FRS 102 SORP).

Yes No	ü	* -Tick as appropriate
	ü

Please disclose:

(i) the nature of any changes;

(ii) the effect of the change on income and expense or assets and liabilities for the current period; and

(iii) where practicable, the effect of the change in one or more future periods.

1.5 Material prior year errors

No material prior year error have been identified in the reporting period (3.47 FRS 102 SORP).

No material prior	year error	have been identified in the reporting period (3.47 FRS 102 SORP).
Yes No	ü	* -Tick as appropriate
	ü

Please disclose:

(i) the nature of the prior period error; (ii) for each prior period presented in the accounts, the amount of the correction for each account line item affected; and

(iii) the amount of the correction at the beginning of the earliest prior period presented in the accounts.

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Section C Notes to the accounts (cont)

Note 2 Accounting policies 2.2 INCOME

This standard list of accounting policies has been applied by the charity except for those ticked "No" or "N/a". Where a different or additional policy has been adopted then this is detailed in the box below.

Yes No N/a	Yes No N/a	Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a


ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a
ü	ü	ü
Yes No N/a

W k i i l d l f bl l h i lik l h

	ü	ü	ü
Yes No N/a
	ü	ü	ü
Yes No N/a
	ü	ü	ü
Yes No N/a
	ü	ü	ü

POLICIES ADOPTED ADDITIONAL TO OR DIFFERENT FROM THOSE ABOVE

Section C Notes to the accounts (cont)

Note 3 Analysis of income

Other: TOTAL INCOM Other informati Donations and legacies: Charitable activities: Other trading activities: Income from investments: Separate material item of income:	Analysis	Total funds Prior year £ £ Unrestricted funds Restricted income funds Endowment funds	Total funds Prior year £ £ Unrestricted funds Restricted income funds Endowment funds	Total funds Prior year £ £ Unrestricted funds Restricted income funds Endowment funds	Total funds Prior year £ £ Unrestricted funds Restricted income funds Endowment funds	Total funds Prior year £ £ Unrestricted funds Restricted income funds Endowment funds
	Donations andgifts	4,983	484	-	5,466	10,159
	Gift Aid	393	-	-	393	373
	Legacies	-	-	-	-	-
	General grants provided by government/other charities	-	-	-	-	-
	Membership subscriptions and sponsorships which are in substance donations	5,128	-	-	5,128	5,023
	Donated goods, facilities and services: AGM lunch		-	-	-
	Other			-	-	-
	Total	10,504	484	-	10,988	15,555

		4,816	3,624	-	8,440	17,187
		-	-	-	-	-
		-	-	-	-	-
	Other	-	-	-	-	-
	Total	4,816	3,624	-	8,440	17,187

		-	-	-	-	-
		-	-	-	-	-
		-	-	-	-	-
	Other	-	-	-	-	-
	Total	-	-	-	-	-

	Interest income	-	-	-	-	-
	Dividend income	-	-	-	-	-
	Rental and leasingincome	-	-	-	-	-
	Other	-	-	-	-	-
	Total	-	-	-	-	-

		-	-	-	-	-
		-	-	-	-	-
		-	-	-	-	-
		-	-	-	-	-
	Total	-	-	-	-	-

	Conversion of endowment funds into income	-	-	-	-	-
	Gain on disposal of a tangible fixed asset held for charity's own use	-	-	-	-	-
	Gain on disposal of a programme related investment	-	-	-	-	-
	Royalties from the exploitation of intellectual property rights	-	-	-	-	-
	Other	-	-	-	-	-
	Total	-	-	-	-	-
	E on:
		15,320	4,108	-	19,427	32,742

All income in the prior year was unrestricted except for: (please provide description and amounts)
Where any endowment fund is converted into income in the reporting period, please give the reason for the conversion.


Within the income items above the following items are material: (please disclose the nature, amount and any prior year amounts)

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Section C Notes to the accounts (cont)

Note 6 Analysis of expenditure

Analysis	Total funds Prior year £ £ Unrestricted funds Restricted income funds Endowment funds	Total funds Prior year £ £ Unrestricted funds Restricted income funds Endowment funds	Total funds Prior year £ £ Unrestricted funds Restricted income funds Endowment funds	Total funds Prior year £ £ Unrestricted funds Restricted income funds Endowment funds	Total funds Prior year £ £ Unrestricted funds Restricted income funds Endowment funds
Incurred seeking donations	112	114	-	226	530
Incurred seeking legacies	-	-	-	-	-
Incurred seeking grants
Operating membership schemes and social lotteries
Staging fundraising events
Fudraising agents
Operating charity shops
Operating a trading company undertaking non-charitable trading activity
Advertising, marketing, direct mail and publicity	-	-	-	-	-
Start up costs incurred in generating new source of future income	-	-	-	-	-
Database development costs	-	-	-	-	-
Other trading activities
Investment management costs:	-	-	-	-
Portfolio management costs	-	-	-	-	-
Cost of obtaining investment advice	-	-	-	-	-
Investment administration costs	-	-	-	-	-
Intellectual property licencing costs	-	-	-	-	-
Rent collection, property repairs and maintenance charges	-	-	-	-	-
	-	-	-	-	-
Total expenditure on raising funds	112	114	-	226	530

Grants to members	6,410	-	-	6,410	12,062
Conferences, meetings and help line	2,353	-	-	2,353	45
Newsletter	761	-	-	761	209
Researchgrants	-	15,000	-	15,000	15,000
Total expenditure on charitable activities	9,524	15,000	-	24,524	27,316

	-	-	-	-	-
	-	-	-	-	-
	-	-	-	-	-
	-	-	-	-	-
Total	-	-	-	-	-

Governance(trustees expenses)	311	-	-	311	120
Administration	1,408	-	-	1,408	1,625
	-	-	-	-	-
	-	-	-	-	-
	-	-	-	-	-
Total other expenditure	1,719	-	-	1,719	1,745

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TOTAL EXPENDITURE

11,354 15,114 - 26,468 29,591

Other information:

Analysis of expenditure on charitable activities

Activity or programme	Activities undertaken directly	Grant funding of activities	Support Costs	Total this year	*Total prior* *year*
	£	£	£	£	£
Activity 1 Activity2

Other
Total

Prior year expenditure on charitable activities can be analysed as follows:

Within the expenditure items above the following items are material: (please disclose the nature, amount and any prior year amounts)

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Section C Notes to the accounts (cont)

Note 7 Extraordinary items

Please explain the nature of each extraordinary item occurring in the period.

Description	This year Last year £ £	This year Last year £ £
		-

	-	-
	-	-
	-	-

	-	-
s	-	-

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Section C Notes to the accounts

Note 10 Details of certain items of expenditure

10.1 Fees for examination of the accounts

Please provide details of the amount paid for any statutory external scrutiny of accounts and other services provided by your independent examiner. If nothing was paid please enter '0' in the appropriate box(es).

Independent examiner’s fees Assurance services other than audit or independent examination Tax advisory fees Other fees (for example: financial advice, consultancy, accountancy services) paid to the independent examiner	This year £	Last year £
	0	0
	0	0
	0	0
	0	0

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CC17a (Excel)

Section C Notes to the accounts (cont)

Note 13 Grantmaking

Please complete this note if the charity made any grants or donations which in aggregate form a material part of the charitable activities undertaken.

13.1 Analysis of grants paid (included in cost of charitable activities)

Analysis	Grants to institutions	Grants to individuals	Support costs	Total
			£	£
Mobilityaids		6,410	Nil	6,410
Respite support		Nil	Nil	-
			-	-
*Total*	-	6,410	-	6,410

Please enter “Nil” if the charity does not identify and/or allocate support costs.

13.2 Grants made to institutions

13.2 Grants made to institutions	13.2 Grants made to institutions
*My charity has made grants to particular institutions that are material in* *the context of its grantmaking. Details of the institution supported,* *purpose of the grant and total paid to each institution is available on the* *charity's web site.*		*Yes*	*Please provide* *details of charity's* *URL.*
		No	*Provide details* *below*

Names of institution	Purpose		Total amount of grants paid £
Exeter University	Research into HSP		15,000

			-
			-
			-
			-
			-
			-
			-
			-
*Total grants to institutions in reporting period* *Other unanalysed grants* *TOTAL GRANTS PAID*			15,000
			-
			15,000

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CC17a (Excel)

Section C Notes to the accounts (cont)

Note 19 Debtors and prepayments

Please complete this note if the charity has any debtors or prepayments.

Note 19 Debtors and prepayments *Please complete this note if the charity has any* *debtors or prepayments.*
19.1 Analysis of debtors Trade debtors Prepayments and accrued income Other debtors Total	This year £	Last year £
	-	-
		600.0
		-
	-	600.0

Please complete 19.2 where a material debtor is recoverable more than a year after the reporting date.

19.2 Analysis of debtors recoverable in more than 1 year (included in debtors above)

Trade debtors Prepayments and accrued income Other debtors Total	This year £	Last year £
	-	-
	-	-
	-	-
	-	-
	-	-

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CC17a (Excel)

Section C Notes to the accounts (cont)

Note 24 Cash at bank and in hand

Short term cash investments (less than 3 months maturity date) Short term deposits Cash at bank and on hand Other Total	This year £	Last year £
	-	-
	-	-
	125,325 131,766
	-	-
	125,325	131,766

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CC17a (Excel)

Section C Notes to the accounts (cont)

Note 25 Fair value of assets and liabilities

25.1 Please provide details of the charity's exposure to credit risk (the risk of incurring a loss due to a debtor not paying what is owed) , liquidity risk (the risk of not being able to meet short term financial demands) and market risk (the risk that the value of an investment will fall due to changes in the market) arising from financial instruments to which the charity is exposed at the end of the reporting period and explain how the charity manages those risks.

HSP is exposed to credit risk with Barclays Bank who hold the charity's bank account

25.2 Please give details of the amount of change in the fair value of basic financial instruments (debtors, creditors, investments (see section 11, FRS 102 SORP)) measured at fair value through the SoFA that is attributable to changes in credit risk.

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CC17a (Excel)

Section C Notes to the accounts (cont)

Note 28 Transactions with trustees and related parties

If the charity has any transactions with related parties (other than the trustee expenses explained in guidance notes) details of such transactions should be provided in this note. If there are no transactions to report, please enter “True” in the box or "False" if there are transactions to report.

28.1 Trustee remuneration and benefits

None of the trustees have been paid any remuneration or received any other benefits from an employment with their charity or a related entity (True or False)

In the period the charity has paid trustees remuneration and benefits. Please give the amount of, and legal authority for, any remuneration or other benefits paid to a trustee by the charity or any institution or company connected with it.

Amounts paid or benefit value	Amounts paid or benefit value	Amounts paid or benefit value	Amounts paid or benefit value	Amounts paid or benefit value
Thisyear				Lastyear
Remuneration	Pension contribution	Redundancy (including loss of office)/ex gratia	Other	TOTAL
£	£		£	£

Please give details of why remuneration or other employment benefits were paid.

Where an ex gratia payment has been made to a trustee, provide an explanation of the nature of the payment.

28.2 Trustees' expenses

If the charity has paid trustees expenses for fulfilling their duties, details of such transactions should be provided in this note. If there are no transactions to report, please enter “True” in the box below. If there are transactions to report, please enter "False".

No trustee expenses have been incurred (True or False)			0

Type of expenses reimbursed		This year	Last year
		£	£
Travel		207.95	120
Subsistence			0
Accommodation		103.27	0
Conference registration fee			0

	TOTAL	311.22	120
Please provide the number of trustees reimbursed for expenses or who had expenses paid by the charity
	1

28.3 Transaction(s) with related parties

Please give details of any transaction undertaken by (or on behalf of) the charity in which a related party has a material interest, including where funds have been held as agent for related parties. If there are no such transactions, please enter 'true' in the box provided.

There have been no related party transactions in the reporting period (True or False)	There have been no related party transactions in the reporting period (True or False)	There have been no related party transactions in the reporting period (True or False)	There have been no related party transactions in the reporting period (True or False)	There have been no related party transactions in the reporting period (True or False)	There have been no related party transactions in the reporting period (True or False)	1

Name of the trustee or related party	Relationship to charity	Description of the transaction(s)	Amount	Balance at period end	Provision for bad debts at period end	Amounts written off during reporting period
			£	£	£	£

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In relation to the transactions above, please provide the terms and conditions, including any security and the nature of any payment (consideration) to be provided in settlement. For any related party, please provide details of any guarantees given or received.

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