## **Trustees’ Annual Report for the period** ## **From 01 January 2020 To 31 December 2020** ## **Charity name: Pitt Hopkins UK** ## **Charity registration number: 1167153** ## **Objectives and Activities** ||SORP reference|| |---|---|---| |Summary of the purposes of
the charity as set out in its
governing document|Para 1.17|(1) Raising awareness of Pitt-Hopkins
syndrome for the public.
(2) Supporting families by providing
information and funding to facilitate
opportunities to meet.
(3) Making contact with medical and social
professionals.
(4) Fundingresearch| |Summary of the main
activities in relation to those
purposes for the public
benefit, in particular, the
activities, projects or services
identified in the accounts.|Para 1.17 and
1.19|Signing of research contract with Professor
Smidt.
Production of information booklet based on the
published Guidelines from the 2018 World
Congress.
Maintenance and improvement of the Pitt
Hopkins UK website and phone app.
Organisation of Family Day (February) and on-
line hosting of smaller informal meetings.
Participation in the European Reference
Networks (ITHACA group).
Taking part in on-going training on running a
small charity.
Representative of rare diseases at meetings and
events.
Improvement of charity governance.| |Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|All activities have been undertaken with due
regard to the guidance issued to trustees by the
Charity Commission on public benefit.| ## **Additional information (optional)** You may choose to include further statements where relevant about: ||SORP reference|| |---|---|---| |Policy on grant making|Para 1.38|Grant applications made.| |Policy on social investment
including program related
investment|Para 1.38|| |Contribution made by
volunteers|Para 1.38|Website re-design and Pitt-Hopkins app
manager are provided by volunteers.| |Other||| ## **Achievements and Performance** ||SORP reference||| |---|---|---|---| |Summary of the main
achievements of the charity,
identifying the difference the
charity’s work has made to
the circumstances of its
beneficiaries and any wider
benefits to society as a
whole.|Para 1.20||**Raising Awareness/Support**
The charity continued to disseminate
information and provide support to parents and
families via a dedicated phone line, website,
app, social media, e-mail and personal contac~~ts~~.
The major project for the year was to create an
information booklet based on the parent-
friendly version of the management guidelines
produced during 2019 for parents which could
also be given to medical professionals. The task
required further re-writing of the text, lay out
design and application of the branding strategy
to the document.
As in previous years, Facebook Profile photos for
use on Pitt-Hopkins Awareness Day (September
18) were prepared. An Awareness Day campaign
video was also produced. The Chair took part in
the Parliamentary lobby for Rare Disease Day in
February just before the lockdown.
The Charity continued to work in partnership
with the Cambridge Rare Disease Network
(CRDN), Findacure, EURORDIS, Genetic Alliance
UK and Rare Revolutionaries.| The Chair, as an ePAG advocate and an elected member of the patient board for ERN ITHACA participated in on-line training courses and gave a presentation to geneticists in December. A family meeting was organised in Rickmansworth at the beginning of February, just before the pandemic started. and various informal parent gatherings were held on-line during the lockdown period. The charity had runners in the Big Half Marathon in February. T-shirts were designed and made available for the runners, if desired. **Administration** The trustees met four times during the year, the meetings being held on-line. The AGM was held (on-line) in October 2020 In September, Stewart Boraston came to the end of his three-year term as a trustee and chose not to stand again. The administration system was migrated to the Office 365 platform provided pro bono which will allow improved filing, access and retrieval of files as well as additional free e-mail addresses. The website host was changed from GoDaddy to Krystal. Policies on Finance, GDPR, Privacy, Fundraising, Equal Opportunities, Bullying/Harassment, Code of Behaviour, Grievance, Whistle Blowing, and Health and Safety were written, reviewed and agreed. During the year, the charity worked with two interns from Keele University and two from the University of Brighton who had become available due to the lockdown. They worked on producing a template for a newsletter, updating the website, producing instructional videos and aiding the general administration of the charity. We also had contact with an MA student from Brighton University who offered to design and conduct a study on the performance of and provision of service given by the charity. The grant from the National Lottery was used to purchase video and audio equipment, design and produce a banner as well as contributing to the design costs of the information booklet. A laptop and printer were purchased with a grant from the Pears Foundation. A pro bono contract was signed with Cyber Fortified to advise on GDPR and provide cyber security. A branding strategy was designed and produced for the charity by one of the parents pro bono. The free Pitt Hopkins UK app was reviewed and updating commenced. **Finance/Fundraising** The main income stream in 2020 came from grants from the National Lottery, Pears Foundation, Virgin Money Giving, Facebook and Gift Aid. A small amount was raised from individual donations. The charity joined the Amazon Smile scheme and Sustainably . A sub-group of the trustees was set up to focus on fundraising. **Research** Following further discussions and completion of due diligence, a four-year contract was signed with Professor Marten Smidt at the Swammerdam Institute for Life Sciences, University of Amsterdam. The charity had discussions with the Patient Led Research Hub which seeks to identify research priorities for rare disease groups, co-ordinate with researchers and explore funding sources. |**Additional information (optional)**
You may choose to include further statements|**Additional information (optional)**
You may choose to include further statements|where relevant about:| |---|---|---| |Achievements against
objectives set|Para 1.41|2020 has been a difficult year for all charities.
The Covid-19 pandemic and consequent
restrictions has impacted the ability of charities
to achieve their aims and limited fundraising
possibilities. As a small charity run by parents
and family members, we have not had to deal
with issues of staff furloughs or office space/rent
and been able to make the most of the
opportunities presented. Several organisations
e.g. The National Lottery, offered grants to
support charities during the pandemic and Pitt
Hopkins UK made a number of successful
applications and thanks to great efforts by the
Chair, the charity was able to raise about 80% of
the 2019 income total.| |||As the charity mainly operates on-line, the
ability to give information and support
during the pandemic was reasonably
unaffected by the changing circumstances
particularly with the grant support.| |---|---|---| |Performance of fundraising
activities against objectives
set|Para 1.41|| |Investment performance
against objectives|Para 1.41|| |Other||| ## **Financial Review** |**Financial Review**||| |---|---|---| |Review of the charity’s
financial position at the end
of the period|Para 1.21|The yearly balance was approx. £16,000| |Statement explaining the
policy for holding reserves
statingwhytheyare held|Para 1.22|The Reserve Fund stands at a balance of 6-9
months of the estimated annual running costs of
the charity| |Amount of reserves held|Para 1.22|£5000| |Reasons for holding zero
reserves|Para 1.22|| |Details of fund materially in
deficit|Para 1.24|| |Explanation of any
uncertainties about the
charity continuing as a going
concern|Para 1.23|| ## **Additional information (optional)** You may choose to include further statements where relevant about: |The charity’s principal
sources of funds (including
any fundraising)|Para 1.47|Grants, Gift Aid, donation schemes e.g.,
Virgin Money Giving, individual fund-raising.| |---|---|---| |Investment policy and
objectives including any
social investment policy
adopted|Para 1.46|| |A description of the principal
risks facing the charity|Para 1.46|| |Other||| ## **Structure, Governance and Management** |Description of charity’s
trusts:||| |---|---|---| |Type of governing document
(trust deed, royal charter)|Para 1.25|Written constitution| |How is the charity
constituted?
(e.g unincorporated
association, CIO)|Para 1.25|Charitable Incorporated Organisation| |Trustee selection methods
including details of any
constitutional provisions e.g.
election to post or name of
any person or body entitled
to appoint one or more
trustees|Para 1.25|Appointed by existing trustees| **Additional information (optional)** You may choose to include further statements where relevant about: |||| |---|---|---| |Policies and procedures
adopted for the induction and
training of trustees|Para 1.51|| |The charity’s organisational
structure and any wider
network with which the
charity works|Para 1.51|Stewart Boraston ended his term as a
trustee.| |Relationship with any related
parties|Para 1.51|| |Other||| ## **Reference and Administrative details** |Charityname|Pitt Hopkins UK| |---|---| |Other name the charityuses|Pitt Hopkins syndrome UK| |Registered charity number|1167153| |Charity’s principal address|76 Auckland Road
Ilford
Essex
IG1 4SF| ||| **Names of the charity trustees who manage the charity** |1
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20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year**| |---|---|---|---| ||Susan Routledge|Chair|| ||Virginia Routledge|Treasurer|| ||Leanne Groves||| ||Stewart Boraston||01-01-20 to 15-09-20| ||Debbie Bromley||| ||Julie Cooper||| ||Julie Penniall||| ||Brian Routledge||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| ||||| – Corporate trustees names of the directors at the date the report was approved **Director name** Name of trustees holding title to property belonging to the charity **Trustee name Dates acted if not for whole year** ## **Funds held as custodian trustees on behalf of others** |Description of the assets
held in this capacity|None| |---|---| |Name and objects of the
charity on whose behalf the
assets are held and how this
falls within the custodian
charity’s objects|None| |Details of arrangements for
safe custody and
segregation of such assets
from the charity’s own assets|None| ## **Additional information (optional)** |**Additional information (optional)**|**Additional information (optional)**|**Additional information (optional)**| |---|---|---| |**Names and addresses of advisers (Optional information)**||| |**Type of**|**Name**|**Address**| |**adviser**||| ## **Name of chief executive or names of senior staff members (Optional information)** ## **Exemptions from disclosure** Reason for non-disclosure of key personnel details ## **Other optional information** ## **Declarations** **The trustees declare that they have approved the trustees’ report above.** **Signed on behalf of the charity’s trustees** **Signature(s)** Brian Keith Routledge **Full name(s)** Susan Routledge **Position (eg Secretary,** Chair Trustee **Chair, etc)** **Date** ## **Pitt Hopkins UK Annual Income & Expenditure Statement 2020** ## **Income** |4010 - Virgin Money
4020 - Facebook
4030 - Give As You LIve
4040 - Gift Aid
4050 - Interest Earned
4060 - Stripe
4070 - Amazon Smile
4900 - Other income
**Expenses**
5005 - Virgin Fees
5008 - Stripe Fees
5015 - Grants & Donations
5060 - Other Direct Expenses
6012 - Conference Fees
**Overheads**
7400 - Travelling
7510 - Postage & Carriage
7520 - Office Stationery
7540 - Internet Charges
7550 - Software
7630 - Insurance
7900 - Bank Charges and Interest
8030 - Equipment Depreciation
8200 - General Expenses
8210 - Subscriptions
8220 - Clothing Costs|3964.18
3446.59
51.12
1254.87
89.27
40.00
26.80
10132.92
**Total Income**
16.23
1.60
65050.00
40.00
76.02
**Total Expenses**
**GROSS INCOME**
208.54
34.02
20.27
2914.31
307.99
306.93
39.80
28.08
156.40
289.63
15.66
**Total Overheads**
**NET INCOME**|**£19,005.75**
**£65,183.85**
**-£46,178.10**|**£19,005.75**|**£19,005.75**| |---|---|---|---|---| ||||**£65,183.85**|| |||**£4,321.63**
**-£50,499.73**||**£4,321.63**|