## **PMSF UK ANNUAL REPORT** ## **& AGM MINUTES** AGM Held, Sun 15[th] January 2023, 14:30-15:30 via Zoom **1** ## **AGM Minutes** |**#**|**Agenda Item**|**Presenter**|**Notes**| |---|---|---|---| |1|Welcome / Introductions|Penny|• Attendees were – Penny Bradley (T) (Chair), Alison Turner (T),
Giles Bradley (T), Lynda White (T), Natalie James (T), Sarah
Bickerstaffe (T)
• 6 trustees, shown as (T) above (min 2 required)| |2|Regional Membership Status|Lynda /
Alison|• Now 320 region 6 members in UK/Ireland (as of Fri 6/1/23) (was
292 at last AGM in Nov 2021)| |3|List of achievements in 2022|Giles|• Summary of 2022 achievements approved and will be shared with
the PMSF UK communication
• Photo highlights of the last PMSF UK year discussed| |4|Review and approval of accounts|Giles|• Draft accounts presented for review and agreed
• Will be presented for Independent Examination and then
submitted to Charity Commission before the deadline of July
2023.| |5|Presented for agreement:
a. Confirmation of Charity Objectives
b. Confirmation of trustees
c.
Review of Charity Policies
d. Plans for next year|All|• Agreed. See separate slide
• UK wide Family Day likely to be held in 2025 to be in alternate
years with the Global Foundation (to be confirmed). Will continue
Regional Events and potential Family Day meet-up (details to be
confirmed, open to all UK families)| |6|Any other business|Penny to
chair|| |7|Closing|Penny|| **2** ## **Agenda Item 3: Key achievements for 2021-2022** **Key Achievements and Performance Highlights – for the year to 30[th] September 2022** This is now our **8[th] full year as a charity!** Our community has grown to **320 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 200 payments in total during the year to over 100 different families, incl. over 40 Covid-19 support awards made in January 2022. Since beginning the awards, they have benefited over 150 of our UK/Ireland families - **More funds raised for PMSF UK than ever before** – over 50 direct donations and 948 individual JustGiving donations in the year. More than 20 new JustGiving fundraising pages created for walking (incl. one for 50k and another in kilts), cycling, sky-diving, running, Christmas lights - **Shine Green and PMS Awareness Day** – lighting up 14 different UK landmarks to mark the global Awareness Day in October 2022 (& a radio interview on BBC Radio Lancashire!) - **Regional Family Days** held in the North, Midlands, South, London and Ireland, attended by approx. **50 UK/Ireland families** - **More PMSF UK merchandise sold than ever before** – including Christmas jumpers, Christmas cards and our PMSF UK ‘We wear our genes differently’ t-shirts and hoodies - Continued **support for Phelan Lucky** , incl. a UK bulk order - **Website redesigned and relaunched in 2021 –** more website views than last year, 6,771 users visiting and over 20,000 individual page views (up from 13,157 in 2021) - **Bigger Social Media presence than ever** – growing presence and more posts shared than ever before. We now have 600 public Facebook page followers, an active closed Facebook group for families, 276 Instagram followers and a presence now on Twitter as well. **3** ## **Agenda Item 3: A few highlights of our PMSF UK year** **4** ## **Agenda Item 3: A few highlights of our PMSF UK year** **5** ## **Agenda Item 3: A few highlights of our PMSF UK year** **6** ## **Agenda Item 3: A few highlights of our PMSF UK year** **7** ## **Agenda Item 4: Financial Highlights for 2021-22** - **The year to end of September 2022 is by far the biggest year we’ve ever had – for donations, merchandise and awards** **8** ## **Agenda Item 4: Financial Results Detail** Will be submitted for Independent Examination and then to Charity Commission This has been the charity’s best year ever… And our healthy cash balance means we are continuing the great work (Family Days, Awards etc.) in 2022/3 - **The most awards to our families we have ever made** - **The most donations we’ve ever received** - **The best JustGiving year ever** - **More Regional Family Days held than ever** across most of our Regions - **The most merchandise we’ve ever sold** - 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 |||| |---|---|---| ||**This Year (2022)**
**1-Oct-21 to 30-Sep-22**|**2021**
**1-Oct-20 to 30-Sep-21**| |||| |**Cash**||| |Openingcash balance|**£37,863.12**|**£27,459.32**| |Closingcash balance[bank & PayPal]|**£71,842.83**|**£37,863.12**| |||| |**Receipts**|**£94,538.40**|**£43,749.49**| |Donations|£87,488.81|£38,218.75| |_Restrictedfunds(1)_||| |_Direct(2)_|£56,216.89|£9,847.49| |_JustGiving_|£28,920.76|£25,988.60| |_VirginGiving [Closed now]_|£0.00|£0.00| |_FaceBook_|£477.85|£1,422.07| |_Amazon_|£548.10|£604.79| |_PayPal_|£1,260.05|£314.16| |_Benevity_|£0.00|£0.00| |_EasyFundraising_|£65.16|£41.64| |Sales of merchandise(3)|£7,049.59|£5,530.74| |_Sales of merchandise(Bank credits)_|£2,230.90|£4,083.20| |_Sales of merchandise(PayPal)_|£4,818.69|£1,447.54| |||| |**Payments**|**-£60,558.69**|**-£33,345.69**| |Awards to PMSF families|-£43,725.05|-£25,375.71| |_Awards Programme(excl. Travel)_|-£43,725.05|-£25,375.71| |_Travel awards_||| |Research Awards(to US Foundation)|-£2,070.08|£0.00| |Donation to PMSF(US Foundation)|-£1,000.00|£0.00| |Website costs|-£732.25|£0.00| |Event costs(incl. FamilyDays)|-£1,948.86|£0.00| |Purchase of CharityEvent Places|-£1,688.01|-£530.00| |Purchase of merchandise|-£5,629.44|-£4,737.59| |Purchase ofprinted leaflets|£0.00|£0.00| |Postal expenses|-£716.60|-£505.13| |JustGiving& Virgin costs|-£561.60|-£561.60| |Other expenses(4)|-£2,486.80|-£1,635.66| |||| **9** ## **Agenda Item 4: 2021-22 Donations Summary** - - Total donations of **£87,488.71** – from the following sources: - **£28,921 raised via JustGiving** (breaking last year’s record for the most we have ever raised via JustGiving, consisting of **948 individual donations** made via JustGiving during the financial year) - **£56,217 received as direct donations** (including a very generous legacy donation) - **£2,351 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 2021-2022, including those who took part in Run Like a Hero and the Glasgow Kiltwalk. - ✓ Bec Ecclestone, Vicky Lewis and Tim Hill Royal Parks Half Marathon - ✓ Cooper / Rhodes Family - ✓ Emma Lacey Jurassic Coast Challenge - ✓ Flynn’s Tour de Moor - ✓ Heather Hodson, Dawn Lamin and Steve Lamin’s 50km Walk (& Castlegate Financial) - ✓ Holly Lodge Christmas Lights - ✓ James Picker - ✓ Lisa (Wilton) and Gary’s Yorkshire Three Peaks - ✓ Matthew Chambers Ride London - ✓ Nicola McVennon & colleagues at Ikon Design - ✓ Sammy Coomber - ✓ Sean and Sophie Farrell Sky Dive (& HSBC) - ✓ Stuart and Helen Leighton - ✓ Team Pond Sky Dive - ✓ Townsend Family - ✓ Janet Margaret Smith & Carballo family **10** ## **Agenda Item 5: Items for agreement** |**Item**|**Proposal for agreement**| |---|---| |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 2025) for Lynda
• For completeness, 6 trustees remain: Alison, Giles, Lynda, Natalie, Penny, Sarah.| |c. Review of Charity
Policies|• No change to the charity’s Policies| |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)
• Hold further regional gatherings in 2023 (as we did in 2022)
• UK wide Family Day likely to be held in 2025 to be in alternate years with the Global Foundation (to be
confirmed). Will continue Regional Events and potential Family Day meet-up open to all UK families in
2023 (details to be confirmed)| **11** ## **Agenda Items 6 & 7** |**#**|**Agenda Item**|**Presenter**|**Notes**| |---|---|---|---| |1|Welcome / Introductions|Penny|• Confirmation of trustee attendance (min 2 required)| |2|Regional Membership Status|Lynda /
Alison|• Now 292 region 6 members in UK/Ireland (as of Tue 26/10/21)
(was 281 at last AGM in Nov 2020)| |3|List of achievements in 2022|Giles|• Summary of 2021 achievements noted
• Recognition in appreciation of PMSF UK Awards noted| |4|Review and approval of accounts|Giles|• Draft accounts presented for review
• Subject to agreement, will be presented for Independent
Examination and then submitted to Charity Commission before
the deadline of July 2022.| |5|Presented for agreement:
a. Confirmation of Charity Objectives
b. Confirmation of trustees
c.
Review of Charity Policies
d. Plans for next year|All|• See separate slide| |6|Any other business|Penny to
chair|| |7|Closing|Penny|| **12** **1157423** **Phelan McDermid Syndrome UK** **Receipts and payments accounts For the period** 1-Oct-21 **To from** 30-Sep-22 ## **Section A Receipts and payments** **Unrestricted Restricted Endowment Total funds funds funds funds to the nearest to the nearest £ to the nearest £ to the nearest £ £** **----- Start of picture text -----**
to the nearest £ to the nearest £ to the nearest £
£
A1 Receipts
Donations 87,489 - - 87,489
Merchandise Sales 7,050 - - 7,050
- - - -
- - - -
- - - -
- - - -
- - - -
- - - -
94,538 - - 94,538
Sub total (Gross income for AR)
A2 Asset and investment sales,
(see table).
- - - -
- - - -
Sub total - - - -
Total receipts 94,538 - - 94,538
A3 Payments
Awards to Families 43,725 - - 43,725
Research Awards 2,070 - - 2,070
US Donation 1,000 - - 1,000
Website costs 732 - 732
Events 1,949 - - 1,949
Charity Event Places Purchase 1,688 - - 1,688
Merchandise Purchase 5,629 - - 5,629
Other 3,765 - - 3,765
- - - -
Sub total [ 60,559 ] - - 60,559
A4 Asset and investment
purchases, (see table)
- - - -
- - - -
Sub total [ - ] - - -
Total payments 60,559 - - 60,559
Net of receipts/(payments) 33,980 - - 33,980
A5 Transfers between funds - - - -
A6 Cash funds last year end 37,863 - 37,863
Cash funds this year end 71,843 - - 71,843
**----- End of picture text -----**
## **Section B Statement of assets and liabilities at the end of the period** ||||**Unrestricted**|**Unrestricted**||**Restricted**| |---|---|---|---|---|---|---| |**Categories**|**Details**|||**funds**||**funds**| |||||**to nearest £**||**to nearest £**| |**B1 Cash funds**|Cash in bank / PayPal
**_Total cash funds_**||


|**71,843**
**-**
**-**
**71,843**|


|**-**
**-**
**-**
**-**| ||(agree balances with receipts and payments
account(s))||OK||OK|| ||||**Unrestricted**|||**Restricted**| |||||**funds**||**funds**| |**B2 Other monetary assets**|**Details**|||**to nearest £**
**-**||**to nearest £**
**-**| |||||**-**||**-**| |||||**-**||**-**| |||||**-**||**-**| |||||**-**||**-**| |||||**-**||**-**| ||**Details**||**Fund to which**
**asset belongs**||**Cost (optional)**|| |**B3 Investment assets**|||||
|**-**
**-**| |||||||**-**| |||||||**-**| |||||||**-**| ||**Details**||**Fund to which**
**asset belongs**||**Cost (optional)**|| |**B4 Assets retained for the**|PMSF merchandise stock value, all items||Unrestricted|||**-**| |**charity’s own use**||||||**-**| |||||||**-**| |||||||**-**| |||||||**-**| |||||||**-**| |||||||**-**| |||||||**-**| |||||||**-**| ||||**Fund to which**|||**Amount due**| ||**Details**||**liability relates**|||**(optional)**| |**B5 Liabilities**|||||
|**-**
**-**| |||||||**-**| |||||||**-**| |||||||**-**| |Signed by one or two trustees on
behalf of all the trustees||Signature||Print|Name|| |||||Giles|Bradley|| **----- Start of picture text -----**
CC16a
**----- End of picture text -----**
## **Last year** **to the nearest £ 38,219 5,531 - - - - - - 43,749** **43,749** **25,376 - - - - 530 4,738 2,702 - 33,346** **33,346 10,404 - 27,459 37,863** ## **Endowment funds to nearest £** **-** OK ## **Endowment funds to nearest £** **-** **Current value (optional)** **-** **Current value (optional)** **When due (optional)** Date of approval ## **Independent examiner’s report to the trustees of PMSF UK** I report to the trustees on my examination of the accounts of PMSF UK for the year ended 30 September 2023. ## **Responsibilities and basis of the report** As the charity 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 PMSF UK’s accounts carried out under section 145 of the 2011 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 giving me cause to believe that in any material respect: 1. accounting records were not kept in respect of PMSF UK as required by section 130 of the Act, or 2. the accounts do not accord with those records 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. Signed: Name: Elizabeth Cain Relevant professional qualification or membership of professional bodies: ACA qualification from the ICAEW Address: 33 Hoodcote Gardens, London, N21 2NG Date: 26 May 2023