Finance Score: -2

Governance Score: 6

Support Score: 5

Liabilities <10%: +3
Positive trading contribution: +2;Multiple Deficits: -2
Fundraising costs high: -5

Good trustee age range: +3
Gender balanced board: +3

Grant maker support: +5

Overall GiG Score: 9

THE SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES

THIS IS THE INCORPORATED SUCCESSOR CHARITY TO CHARITY NUMBER 287034, WHICH IS ITS UNINCORPORATED PREDECESSOR.The MPS Society is the only registered UK charity providing professional support to individuals, families and professionals affected by MPS and related diseases throughout the UK.

Analysis by Giving is Great

Positives:

The charity has received backing from several prominent grant makers recently
This charity has a robust balance sheet
More than half of total income was derived from trading and fees in the latest year
The Board appears to be well diversified in terms of age and gender

Regulatory & Governance issues to consider:

This charity is not recognised by HMRC for Gift Aid according to its latest published return

Financial issues to consider:

On several occasions in recent years income has been less than spending
Fundraising costs are extremely high relative to funds raised

Financial Data ?

Income & Spending ?

Sources of Income ?

Y/E	Income £k	Spending £k	Surplus/ Deficit	Fundraising Cost £k	Total Funds £k	Unrestricted Funds £k	Mths Rsrvs	Staff
31/12/22	£1,721	£2,011	£-290	£655	£2,529	£2,292	13.7	34
31/12/21	£1,443	£1,581	£-138	£598	£2,819	£2,644	20.1	33
31/12/20	£2,055	£1,513	£542	£637	£2,415	£2,366	18.8	30
31/12/19	£1,699	£1,581	£118	£681	£2,415	£2,366	18	29
31/12/18	£1,503	£1,294	£208	£563	£2,297	£2,222	20.6	28
31/12/17	£3,594	£3,660	£-66	£2,602	£2,089	£2,037	6.7	25
31/12/16	£3,553	£3,120	£433	£2,049	£2,400	£1,662	6.4	22
31/12/15	£3,576	£3,316	£260	£2,279	£1,966	£1,363	4.9	19
31/12/14	£3,349	£3,036	£313	£2,028	£1,706	£576	2.3	17
31/12/13	£1,538	£1,635	£-97	£52	£1,393	£539	4	13
31/12/12	£3,280	£1,789	£1,491	£92	£1,491	£479	3.2	12

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Financial Ratios

Fundraising Costs/Relevant Income: 98.9%
Fundraising Costs/Total Spending: 32.6%
Senior Staff Costs/Total Spending: 6%
Highest pay band: £100,000-£110,000
Liabilities/Assets: 2%
Liabilities/Income: 4%
Unrestricted Funds/Total Funds: 91%
Reserves/Spending: 13.7 months
Net Current Assets/Spending: 7 months
Quick Ratio: 12.7

Asset Split ?

Established: 13 years

www.mpssociety.org.uk

mps@mpssociety.org.uk

07867596494

Charity Commission for England and Wales

Tweets

Listed activities

Disability
Education/Training
The Advancement Of Health Or Saving Of Lives

GiG Classification

Poverty relief

How it operates

Provides advocacy/advice/information
Provides services
Sponsors or undertakes research

Where it operates

Throughout England And Wales,

Who it helps

People With Disabilities

Who works here?

34 employees

Who's supporting them? ?

Donations from Grant Makers ?

We have details on the following significant donations. Multi-year donations are allocated to the years for which they are earmarked.

Specific Donations

Amount	When Months	To be used for
National Lottery Community Fund - Counselling for young people diagnosed with an MPS or related disease
£10,000	13/05/2022	The funding will be used to run a counselling service for young people aged 16–18 living with Mucopolysaccharide (MPS) and related multi-organ lysosomal storage diseases. The project aims to enable ....more The funding will be used to run a counselling service for young people aged 16–18 living with Mucopolysaccharide (MPS) and related multi-organ lysosomal storage diseases. The project aims to enable them to better understand their condition develop coping strategies and improve their mental wellbeing and resilience.
National Lottery Community Fund - Rare but not alone- Connecting the MPS Community
£195,000	03/03/2021 35	The project will use its funding create a more connected community by providing support to families opportunities to build relationships and encourage peer support while creating a platform for those ....more The project will use its funding create a more connected community by providing support to families opportunities to build relationships and encourage peer support while creating a platform for those most affected to shape the services that matter to them. It hopes to support people in feeling less isolated improving independence and make people feel more informed about Mucopolysaccharide (MPS) and related Lysosomal Storage Diseases.
National Lottery Community Fund - Advocacy and support- Covid 19 response
£38,000	11/05/2020 6	The funding will be used towards staffing costs for their Support and Advocacy service for sufferers of Mucopolysaccharide diseases and their families. This will allow them to continue the service as ....more The funding will be used towards staffing costs for their Support and Advocacy service for sufferers of Mucopolysaccharide diseases and their families. This will allow them to continue the service as they transfer all their support to online/phone-based support for both sufferers and parents and carers. Support will include member visits and clinics being delivered remotely everyday between the hours of 7am and 10pm and a regularly updated page on the organisation website offering specific guidance.
Masonic Trust - MCF Large Grant
£62,725	10/02/2020	Grant to fund an Advocacy Support Officer to support children and young people with MPS, a rare medical condition.
The Rayne Foundation - Grant to Society for Mucopolysaccharide Diseases
£40,000	14/03/2016 24	Towards developing an Advocacy Support Service for MPS teenagers and young people.

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (11)

Current Trustees appointed

Gender Split

Age Range of Trustees: 39-82

KATY JOANNE BROWN Appointed: 2020, Occupation: Manager

PROFESSOR DERRALYNN ARLENE HUGHES Appointed: 2022, Occupation: Physician Nhs

DAVID MAURICE PATTON Appointed: 2017, Occupation: Chartered Accountant

DR FIONA JANE STEWART Appointed: 2020, Occupation: Retired

JAMES HENRY GARTHWAITE Appointed: 2018, Occupation: Management Consultant

JUDITH EVANS Appointed: 2011, Occupation: Retired

PROFESSOR BRYAN WINCHESTER Appointed: 2011, Occupation: Retired

PHILIP JOHN PEARSON Appointed: 2019, Occupation: Sales Manager

SARAH BURGESS Appointed: 2019, Occupation: Youth Worker

WILMA ROBINS Appointed: 2011, Occupation: Retired

PROFESSOR SIMON JAMES ROBERT HEALES Appointed: 2022, Occupation: Consultant Biochemist, Other trusteeship: THE AADC RESEARCH TRUST,

Legal constitution

Charitable company registered in England & Wales on 19/08/2011, number: 1143472
Registered at Companies House on 02/08/2011, number: 07726882

Gift Aid

NOT registered with HMRC for Gift Aid

Policies in force

Complaints handling
Conflicting interests
Paying staff
Risk management
Safeguarding vulnerable beneficiaries

Filing Record

11 returns made; all on time

Main office

Mps House
Repton Place
White Lion Road
Amersham
HP7 9LP

Objectives

1. THE RELIEF OF PERSONS SUFFERING FROM MUCOPOLYSACCHARIDE AND RELATED LYSOSOMAL DISEASES; AND2. TO ADVANCE MEDICAL RESEARCH INTO THE CAUSE, CURE, PREVENTION OR RELIEF OF SUCH DISEASES AND RELATED PAEDIATRIC NEURODEGENERATIVE BRAIN DISEASES PROVIDED THAT THE USEFUL RESULTS OF THE RESEARCH SHALL BE PUBLISHED.

Data Sources