## **PMSF UK ANNUAL REPORT** ## **& AGM MINUTES** AGM held Sat 23[rd] March 2024, 10:00-11:00 via Zoom **1** ## **AGM Minutes** |**#**|**Agenda Item**|**Presenter**|**Summary of meeting mInutes**| |---|---|---|---| |1|Welcome / Introductions|Alison|• Confirmation of 5 trustees in attendance (min 2 required)
• 11 meeting attendees in total| |2|Regional Membership Status|Lynda /
Alison|• Now 360 region 6 members in UK/Ireland (as of Thu 14/3/24) (was 315 at
last AGM in Nov 2022)
• Changes in the relationship with the Global Foundation were explained by
Alison| |3|List of achievements in 2023|Giles / All|• Summary of 2022-23 achievements noted| |4|Review and approval of
accounts|Giles|• Draft accounts presented for review – They will now be presented for
Independent Examination and then submitted to Charity Commission| |5|Presented for agreement:
a. Confirmation of Charity
Objectives
b. Confirmation of trustees
c.
Review of Charity Policies
d. Plans for next year|Alison|• See page 8| |6|Any other business|Alison to
chair|• Research update provided – SHANK3 gene therapy information on the Global
Foundation website; Potential Insulin study underway at King’s College
London with PMS patients registered in Spring 2025 (we’ll keep you posted)
• Action taken by PMSF UK to review oversight of UK Facebook closed group| |7|Closing|Alison|• Alison closed the meeting
• A recording of the Zoom meeting will be provided to attendees, if requested| **2** ## **Agenda Item 3: Key achievements for 2022-2023** ## **Section D** Achievements and Performance – to 30-Sep2023 This is now our **9[th] full year as a charity, heading for our 10[th] anniversary in June 2024!** Our community has grown to **360 people in the UK and Ireland with PMS** now. As a reminder, it was just over 100 when we began as a registered charity in 2014. Highlights for this financial year include: - **More financial Awards made to families than ever before (to more families than ever)** – over 160 payments in total during the year to over 150 different applicants - **A really successful year of fundraising** – including generous individual donations, several marathon and other run entries, Christmas lights, walks, family events and fundraisers - **Shine Green in October 2022 and October 2023** - **Regional Family Days** held in London, the North-West, Midlands, South and Ireland – and a significant family event held at Alton Towers in October 2023 (technically in the current next financial year) - **A successful year of PMSF UK merchandise sales** – including Christmas jumpers, Christmas cards and other PMSF UK branded items - Continued **support for Phelan Lucky** , incl. a UK bulk order - Continued **support for our website** as a key resource for our families and to drive awareness - Continued our **Social Media presence** – we now have >640 public Facebook page followers, and active closed Facebook group for families, 330 Instagram followers and a presence now on Twitter as well. **3** ## **Agenda Item 3: A few highlights of our PMSF UK year from our social media channels** **4** ## **Agenda Item 4: Financial Highlights for 2022-23** - **The year to end of September 2023 has been another very strong year for the charity, comfortably our 2[nd] best ever, even breaking (just!) 2022’s record for financial awards** **5** ## **Agenda Item 4: Financial Results Detail** Finalised in July 2024, following Independent Examination This has been another very strong year for the charity. And our strong financial position has meant that we have been able to continue this work into 2023-2024 already. - **The most awards to our families we have ever made (a new record)** - **Our 2[nd] biggest year ever for donations** - **Five Regional Family Days held** - **Another strong year of merchandise sales** - Donations made to the **Global Foundation** and **PMSF Research Fund** We continue to manage our out-goings carefully – which are mainly for the website, admin support and postal costs as well as merchandise and fundraising event places **----- Start of picture text -----**
This Year (2023) 2022
1-Oct-22 to 30-Sep-23 1-Oct-21 to 30-Sep-22
Cash
Opening cash balance £71,842.83 £37,863.12
Closing cash balance [bank & PayPal] £100,003.06 £71,842.83
Receipts £89,017.25 £94,538.40
Donations £83,464.76 £87,488.81
Restricted funds (1)
Direct (2) £63,786.78 £56,216.89
JustGiving £18,455.79 £28,920.76
VirginGiving [Closed now] £0.00 £0.00
FaceBook £379.07 £477.85
Amazon £730.08 £548.10
PayPal £38.25 £1,260.05
Benevity £0.00 £0.00
EasyFundraising £74.79 £65.16
Sales of merchandise (3) £5,552.49 £7,049.59
Sales of merchandise (Bank credits) £2,915.00 £2,230.90
Sales of merchandise (PayPal) £2,637.49 £4,818.69
Payments -£60,857.02 -£60,558.69
Awards to PMSF families -£43,807.25 -£43,725.05
Awards Programme (excl. Travel) -£43,807.25 -£43,725.05
Travel awards
Research Awards (to US Foundation) -£2,000.00 -£2,070.08
Donation to PMSF (US Foundation) -£1,168.46 -£1,000.00
Website costs -£732.25
Event costs (incl. Family Days) -£4,302.20 -£1,948.86
Purchase of Charity Event Places -£1,015.00 -£1,688.01
Purchase of merchandise -£5,067.35 -£5,629.44
Purchase of printed leaflets £0.00 £0.00
Postal expenses -£471.23 -£716.60
JustGiving & Virgin costs -£561.60 -£561.60
Other expenses (4) (incl. website from 2023) -£2,463.93 -£2,486.80
**----- End of picture text -----**
**6** ## **Agenda Item 4: 2022-23 Donations Summary** - Total donations of **£83,464.76** – from the following sources: - **£18,456 raised via JustGiving** consisting of **731 individual donations** made via the platform during the financial year - **£63,787 received as direct donations** (including a very generous legacy donation) - **£1,222 via other platforms** (Facebook, Amazon, PayPal, Easyfundraising) - **We appreciate every donation to PMSF UK. - Thank you to all of our supporters** - We would like to say a special thank you to a number of significant fundraising achievements and donations from 2022-2023 - ✓ The Allen Family - ✓ Hillway Christmas Lights - ✓ Karon Banks - ✓ Leza Bliss - ✓ Paul Brockway - ✓ Sammy Coomber - ✓ Rebecca Ecclestone - ✓ Jemima Elliot-Garwood - ✓ Heather Hodson, Dawn Lamin and Steve Lamin’s (& Castlegate Financial) - ✓ Kellie Littmoden and Helen - ✓ Craig O’Reilly - ✓ Shine Green - ✓ The Ruddock Family - ✓ Sophia Williams **7** ## **Agenda Item 5: Items for agreement** |**Item**|**Proposals and agreements**| |---|---| |a. Confirmation of Charity
Objectives|• No change to the charity’s Objectives| |b. Confirmation of
Trustees|• For noting: Renewal of 3 year Trustee term (until 2026) for Alison
• For noting: Confirmation of Alison as Chair
• For noting: Confirmation of Tanith as Trustee
• For noting: Giles’s Trustee term will not be renewed, so steps down as Trustee
• For noting: Thank you to Penny Bradley and Sarah Bickerstaffe for their significant contributions as
Trustees
• For completeness, 4 trustees remain: Alison, Lynda, Natalie, Tanith| |c. Review of Charity
Policies|• No change to the charity’s Policies – although new policies to be created for Complaints and
Vulnerable Adults| |d. Plans for next year|• Plan to continue existing activities (building awareness, regional family days, focus on awards to PMS
families, donate to & support research)
• Tea for Ten, a series of tea parties across the U.K. and Ireland organised by families to celebrate our
10th anniversary in June 2024
• Next UK-wide Family Day planned for 2025| **8** |**Phelan McDermid Syndrome UK**||**1157423**||| |---|---|---|---|---| |**Receipts andpayments accounts**||||**CC16a**| |1-Oct-22
**For the period**
**from**|**To**|30-Sep-23||| ## **Section A Receipts and payments** |**Section A Receipts and payments**||||| |---|---|---|---|---| |**A1 Receipts**
Donations
**83,465**
Merchandise Sales
**5,552**
**-**
**-**
**-**
**-**
**-**
**-**
**89,017**
**-**
**-**
**_Sub total_ -**
**_Total receipts_ 89,017**
**A3 Payments**
Awards to Families
**43,807**
Research Awards
**2,000**
US Donation
**1,168**
Website costs
**-**
Events
**4,302**
CharityEvent Places Purchase
**1,015**
Merchandise Purchase
**5,067**
Other
**3,497**
**-**
**_Sub total_ 60,857**
**-**
**-**
**_Sub total_ -**
**_Total payments_ 60,857**
**_Net of receipts/(payments)_ 28,160**
**A5 Transfers between funds**
**-**
**A6 Cash funds last year end**
**71,843**
**_Cash funds this year end_ 100,003**
**Unrestricted**
**funds**
**to the nearest £**
**_Sub total_**_(Gross income for AR)_
**A2 Asset and investment sales,**
**(see table).**
**A4 Asset and investment**
**purchases, (see table)**|**to the nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Restricted**
**funds**|**to the nearest £**
**Endowment**
**funds**|**Total funds**
**to the nearest £**
**83,465**
**5,552**
**-**
**-**
**-**
**-**
**-**
**-**
**89,017**
**-**
**-**
**-**
**89,017**
**43,807**
**2,000**
**1,168**
**-**
**4,302**
**1,015**
**5,067**
**3,497**
**-**
**60,857**
**-**
**-**
**-**
**60,857**
**28,160**
**-**
**71,843**
**100,003**|**Last year**
**to the nearest £**| |||**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**83,465**|**87,489**| ||||**5,552**|**7,050**| ||||**-**|**-**| ||||**-**|**-**| ||||**-**|**-**| ||||**-**|**-**| ||||**-**|**-**| ||||**-**|**-**| ||||**89,017**|**94,538**| |||||| |||**-**
**-**
**-**|**-**|| ||||**-**|**-**| ||||**-**|**-**| |||||| |||**-**|**89,017**|**94,538**| |||||| |||**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**|**43,807**|**43,725**| ||||**2,000**|**2,070**| ||||**1,168**|**1,000**| ||||**-**|**732**| ||||**4,302**|**1,949**| ||||**1,015**|**1,688**| ||||**5,067**|**5,629**| ||||**3,497**|**3,765**| ||||**-**|**-**| ||||**60,857**|**60,559**| |||||| |||**-**
**-**
**-**|**-**|| ||||**-**|| ||||**-**|**-**| |||||| |||**-**|**60,857**|**60,559**| |||||| ||**-**|**-**
**-**
**-**
**-**|**28,160**|**33,980**| ||**-**||**-**|**-**| ||||**71,843**|**37,863**| ||**-**||**100,003**|**71,843**| ## **Section B Statement of assets and liabilities at the end of the period** |**Categories**
**B1 Cash funds**
**B2 Other monetary assets**
**B3 Investment assets**
**B5 Liabilities**
**B4 Assets retained for the**
**charity’s own use**
Signed by one or two trustees on
behalf of all the trustees|**Details**
Cash in bank / PayPal
**Details**
**Details**
**Details**
PMSF merchandise stock value, all items
**Details**
Signature
**_Total cash funds_**
(agree balances with receipts and payments
account(s))|**to nearest £**
**to nearest £**
**100,003**
**-**
**-**
**-**
**-**
**-**
**100,003**
**-**
OK
OK
**to nearest £**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**
Unrestricted
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
Print Name
Giles Bradley
**Unrestricted**
**funds**
**Restricted**
**funds**
**Unrestricted**
**funds**
**Restricted**
**funds**
**Fund to which**
**asset belongs**
**Fund to which**
**asset belongs**
**Fund to which**
**liability relates**
**Amount due**
**(optional)**|**to nearest £**
**Endowment**
**funds**| |---|---|---|---| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||OK| ||||**to nearest £**
**Endowment**
**funds**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**When due**
**(optional)**| ||||| ||||| ||||| ||||| ||||| ||||| ||||Date of
approval| |||Giles Bradley|| ||||| ## **Phelan-McDermid Syndrome Foundation UK (PMSF UK)** ## **Independent Examiner's Report to the Trustees For The Year To 30 September 2023** ## **Responsibilities and basis of report** I report to the Trustees on my examination of the accounts of the above charity for the year ended 30 September 2023. As the charity's Trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (“the Act”). I report in respect of my examination of the Charity’s accounts carried out under section 145 of the Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act. ## **Independent examiner's statement** I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect: - the accounting records were not kept in accordance with section 130 of the Charities Act; or - the accounts did not accord with the accounting records; or - the accounts did not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair’ view which is not a matter considered as part of an independent examination. I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. Tin Nwe Myint FCCA Delta Accountancy Advice Ltd 8 Margaret Avenue St Albans Hertfordshire AL3 5TE Date: