Finance Score: -5

Governance Score: 5

Support Score: 6

Volatile income & significant deficit in latest year: -5
No PartB

12+ Trustees: -1
Dynamic board: +3
Gender balanced board: +3

Grant maker support: +6

Overall GiG Score: 6

PRADER-WILLI SYNDROME ASSOCIATION UK

To relieve the Charitable needs of people with Prader Willi Syndrome and their families and carers by the provision of services, advice and support as the Trustee's shall determine.

Analysis by Giving is Great

Positives:

The charity has received backing from multiple prominent grant makers recently
There have been no material income shortfalls in recent years
The Board appears to be well diversified in terms of gender and dynamic in terms of composition

Regulatory & Governance issues to consider:

There are 13 trustees whereas the Charities Commission recommends a maximum of 12

Financial issues to consider:

A PartB annual return has not been required and so detailed financial information is not available from the online data
Income has been volatile recently and was significantly lower than spending in the latest year

Established: 10 years

www.pwsa.co.uk

admin@pwsa.co.uk

01332365676

Charity Commission for England and Wales

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	Volun- teers
31/03/23	£383	£519	£-136	n/a	n/a	n/a	n/a	n/a	18
31/03/22	£362	£364	£-3	n/a	n/a	n/a	n/a	n/a	22
31/03/21	£548	£328	£219	£8	£572	£502	18.4	8	22
31/03/20	£415	£405	£10	n/a	n/a	n/a	n/a	n/a	22
31/03/19	£486	£437	£49	n/a	n/a	n/a	n/a	n/a	58
31/03/18	£381	£409	£-29	£0	£0	£0	n/a	0	0
31/03/17	£374	£383	£-9	£0	£0	£0	n/a	0	0
31/03/16	£433	£386	£47	£0	£0	£0	n/a	0	0
31/03/15	£624	£334	£290	£28	£290	£264	9.5	7	0

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Senior Staff Costs/Total Spending: 15%
Highest pay band: £60,000-£70,000

Listed activities

Disability

How it operates

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

Where it operates

Northern Ireland, Scotland, Throughout England And Wales,

Who it helps

People With Disabilities

Who works here?

Unknown number of employees
18 volunteers

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.

Major supporters in last 5 years

BBC Children in Need	£30,500
Garfield Weston Foundation	£20,000
Masonic Trust	£15,000
DCMS	£12,972
National Lottery Community Fund	£9,925

Specific Donations

Amount	When Months	To be used for
National Lottery Community Fund - By Your Side
£9,925	02/12/2022	The funding will be used to support newly diagnosed families whose child is born with Prader-Willi syndrome (PWS) a rare chromosome disorder with no cure. The project offers a bespoke package of ....more The funding will be used to support newly diagnosed families whose child is born with Prader-Willi syndrome (PWS) a rare chromosome disorder with no cure. The project offers a bespoke package of support for each family depending on needs including clear engaging information covering all aspects of PWS. They will be linked to closed social media groups where they meet others on their journey who offer peer-to-peer support and a shoulder to cry on. The project aims to bring families together offering mutual support and build relationships across the PWS community.
Rothschild Foundation - Grant to Prader-Willi Syndrome Association
£1,000	06/05/2022	A donation to the Prada-Willi Syndrome Association in memory of a former Waddesdon employee, Phillippa Plock
BBC Children in Need - Grant to Prader-Willi Syndrome Association UK
£30,500	31/01/2022	This project will deliver support services to children and young people with Prader-Willi Syndrome in Derbyshire. The activities will result in emotional wellbeing, increased fun and enjoyment and ....more This project will deliver support services to children and young people with Prader-Willi Syndrome in Derbyshire. The activities will result in emotional wellbeing, increased fun and enjoyment and improved peer relationships.
Masonic Trust - MCF Small Grant
£15,000	14/10/2020	Unrestricted core funding for small charities
Garfield Weston Foundation - Main Grants award - COVID19 response
£20,000	14/08/2020	PWS Connect
DCMS - Coronavirus Community Support Fund
£9,980	16/06/2020	"The fund aims to:1) To reduce closures of essential charities that provide essential services to vulnerable groups during the COVID-19 crisis by ensuring they have the financial resources to ....more "The fund aims to:1) To reduce closures of essential charities that provide essential services to vulnerable groups during the COVID-19 crisis by ensuring they have the financial resources to operate, thereby reducing the burden on public services.2) To ensure essential services are provided to vulnerable people, both in the short and long term through increased community support through the work of charitable organisations."
DCMS - VSCE CMC Fund
£2,992	19/05/2020	NET, Comic Relief and Children in Need will use this funding to provide: increased support to vulnerable people and hidden groups, thus reducing the burden on public services; reach local grassroots ....more NET, Comic Relief and Children in Need will use this funding to provide: increased support to vulnerable people and hidden groups, thus reducing the burden on public services; reach local grassroots and small organisations who can provide an on-the-ground community response to the crisis; and, support local charitable organisations to mobilise volunteers to enable better targeted support in communities through empowered local groups.
National Lottery Community Fund - Info on the Go.
£9,795	29/11/2017 12	This organisation’s IT software and hardware will be upgraded, allowing them to better serve the needs of the people
Masonic Trust - Support Staff
£10,000	19/10/2016	Funding towards additional member of staff to support people with Prader-Willi Syndrome and their families.

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Data sourced from Donors via 360 Giving

How is it governed?

Trustees (13)

Current Trustees appointed

Gender Split

Based on 12/13 persons

ANDREW ABBOTT Appointed: 2022

ANNE GOOD Appointed: 2017

CATHERINE CAREY Appointed: 2015

DANNY LESLIE Appointed: 2017

DR ANNE LIVESEY Appointed: 2017

DR EVELINE FRANCESCA GEVERS Appointed: 2023

DR ROBIN CHUNG Appointed: 2016

IAN METCALF Appointed: 2014

KAREN POTTS Appointed: 2020

MATT CHRISTENSEN Appointed: 2018

REV STEPHANIE SOKOLOWSKI Appointed: 2017

ROSA MCKAY POLASCHEK Appointed: 2023

SUSAN PASSMORE Appointed: 2023, Occupation: Chief Executive, Other trusteeship: THE PETER PAN CENTRE,

Legal constitution

Charity registered in England & Wales on 19/02/2014, number: 1155846

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

Bullying and harassment policy and procedures
Complaints handling
Complaints policy and procedures
Conflicting interests
Financial reserves policy and procedures
Internal charity financial controls policy and procedures
Internal risk management policy and procedures
Investing charity funds policy and procedures
Investment
Paying staff
Risk management
Safeguarding policy and procedures
Safeguarding vulnerable beneficiaries
Social media policy and procedures
Trustee conflicts of interest policy and procedures
Trustee expenses policy and procedures
Volunteer management

Filing Record

9 returns made; all on time

Main office

PWSA UK
c/o Metcalf Commercial Decorators
3 Deer Park Road
Moulton Park Industrial Estate
NORTHAMPTON

Objectives

TO RELIEVE THE CHARITABLE NEEDS OF PEOPLE WITH PRADER-WILLI SYNDROME AND THEIR FAMILIES AND CARERS BY THE PROVISION OF SERVICES, ADVICE AND SUPPORT AS THE TRUSTEES SHALL DETERMINE.

Data Sources