PMSF UK ANNUAL REPORT
& AGM MINUTES
AGM held Sat 21[st] March 2026, 10:00-11:00 via Zoom
1
AGM Minutes
| # | Agenda Item | Presenter | Notes |
|---|---|---|---|
| 1 | Welcome / Introductions | Alison | • Confirmation of attendance – all trustees present, plus 1 further attendee |
| 2 | Regional Membership Status | Lynda / Tanith |
• Now 424 region 6 members in UK/Ireland (as of 28/02/26, was 384 at last AGM in Jan 2025) • Update on PMSF International from Lynda |
| 3 | List of achievements in 2025 | Alison / Lynda |
• Summary of achievements 2024-2025 noted |
| 4 | Review and approval of accounts | Tanith | • Draft accounts presented for review – and will go forward now to be presented for Independent Examination and submitted to Charity Commission before the deadline of July 2026. |
| 5 | Presented for agreement: a. Confirmation of Charity Objectives b. Confirmation of trustees and additional volunteers c. Plans for 2026/27 |
Alison / Lynda |
• Charity objectives, policies remain the same. • Trustees Confirmed. • Plan to continue existing activities. • A UK wide Family Day will be planned for 2027 |
| 6 | Any other business | Alison to chair |
• Research update including nasal insulin clinical trial provided by Katie Greed • PMS GO • Agreed to update PMSF UK website with guidance, explanations of new organisations and clinical research in the PMS global community. |
| 7 | Closing | Alison | • Alison closed the meeting |
2
Agenda Item 3: Key achievements for 2024-2025
Section D
Achievements and Performance – to 30Sep-2025
Our community has grown to 424 people registered in the UK and Ireland now. As a reminder, it was just over 100 when we began as a registered charity in 2014. Highlights for this financial year include:
-
Our successful Family Day in May 2025 – our largest event ever, attended by 62 families and over 300 people participating on the day
-
Held a regional family day in Ireland with 15 families.
-
Continued financial Awards to families – over 100 payments made in the last financial year. Over the last 10 yrs the charity has awarded just under £390,000 to families through our awards programme.
-
Engaged with Kings College London team on arrangements for planned nasal insulin trial. Over 100 participants expected between ages of 3yrs-18yrs.
-
Successful year of fundraising, including our best ever year on JustGiving
-
A fantastically well-supported Christmas jumper campaign in December 2025
-
Attended an international PMS drug development and scientific conference in Barcelona, focusing on medical research and global engagement.
-
Over 700 Facebook page followers
3
Agenda Item 3: A few highlights of our PMSF UK year from our social media channels
4
Agenda Item 4: Financial Highlights for 2024-25
- 2025 was another year of great fundraising – which enabled the charity to fund both awards and a UK wide family day. PMSF UK is into its 2[nd] decade as a charity on a really strong financial foundation…
5
Agenda Item 4: Financial Results Detail Will be submitted for Independent Examination and then to Charity Commission
The charity has a strong financial foundation which allows it to continue its work to support families:
-
Over 100 awards made to families
-
Fully-funded UK Family Day in London with over 300 participants
-
A record-breaking amount for JustGiving fundraising
We continue to manage our out-goings carefully to keep operating costs low.
----- Start of picture text -----
This Year (2025) This Year (2024)
1-Oct-24 to 30-Sep-25 1-Oct-23 to 30-Sep-24
Cash
Opening cash balance £59,524.91 £100,003.06
Closing cash balance [bank & PayPal] £70,086.96 £59,524.91
Receipts £64,699.59 £63,259.45
Donations £60,121.09 £57,404.42
Restricted funds (1)
Direct (2) £19,987.91 £19,966.20
JustGiving £38,880.35 £35,950.75
VirginGiving [Closed now] £0.00 £0.00
FaceBook £0.00 £44.03
Amazon £0.00 £0.00
PayPal £833.96 £1,029.92
Benevity £212.77 £372.07
EasyFundraising £206.10 £41.45
Sales of merchandise (3) £4,578.50 £5,855.03
Sales of merchandise (Bank credits) £4,578.50 £3,589.63
Sales of merchandise (PayPal) £0.00 £2,265.40
Payments -£54,137.54 -£103,737.60
Awards to PMSF families -£28,247.00 -£57,702.00
Awards Programme (excl. Travel) -£28,047.00 -£57,702.00
Travel awards -£200.00
Research Awards (to US Foundation)
Donation to PMSF (US Foundation)
International Foundation -£4,314.44
Conference attendance -£2,150.33
Website costs -£516.42 -£731.70
Event costs (incl. Family Days) -£13,325.64 -£23,889.68
Purchase of Charity Event Places £0.00 -£444.00
Purchase of merchandise -£5,911.90 -£7,783.66
Purchase of printed leaflets -£825.00
Postal expenses -£535.04 -£507.11
JustGiving & Virgin costs -£561.60 -£561.60
Other expenses (4) (incl. website from 2023) -£2,889.61 -£6,978.41
6
----- End of picture text -----
Agenda Item 4: 2024-25 Donations Summary
-
Total donations of £60,000 in total – from the following sources:
-
£39,000 raised via JustGiving consisting of over 1,200 individual donations made via the platform
-
£20,000 received from > 50 direct donations
-
£1,250 via other platforms (PayPal, Benevity, 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 achievements and fundraising donations from 2024-25
-
✓ Reese Newbury & Team Opus
-
✓ Craig O’Reilly London Marathon 2025
-
✓ Joel Russell Tough Mudder
-
✓ Bryony Blackburn
-
✓ Natalie Lingard & Penny Morby Lake District Ultra Challenge
-
✓ Matthew Tompkinson, Alex Wherry 72 Holes of Golf
-
✓ Collinson Family
-
✓ West Family
-
✓ Lauren Harvey Manchester Marathon
-
✓ Kay Family
-
✓ Jessica Ware Walking the Sandstone Trail
-
✓ Townsend Family
-
✓ David Atkins Great North Swim
-
✓ Louth Golf Club
-
✓ Nicky Murray Cycling 112 miles
-
✓ Ruddock Family
-
✓ Eva Loth
-
✓ Peter Austin Photography
-
✓ Andy Kulina
7
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 and additional volunteers |
• Katie Greed and Natalie Lingard confirmed as Trustees • Renewal of 3 year Trustee term for Lynda White • For completeness, will mean 6 trustees: Alison Turner, Lynda White , Natalie James, Tanith Sherwood , Katie Greed, Natalie Lingard • Peter Greene and Becky James confirmed as Co-Regional Reps • Suzy Kew-Moss and Rebecca Ecclestone added as Volunteers |
| c. Review of Charity Policies |
• No change to the charity’s Policies |
| d. Plans for 2026/2027 | • Plan to continue existing activities (building awareness, regional family days, focus on awards to PMS families, donate to & support research) • A UK wide Family Day will be planned for 2027 |
8
PMSF UK ANNUAL REPORT
& AGM MINUTES
AGM held Sat 21[st] March 2026, 10:00-11:00 via Zoom
1
AGM Minutes
| # | Agenda Item | Presenter | Notes |
|---|---|---|---|
| 1 | Welcome / Introductions | Alison | • Confirmation of attendance – all trustees present, plus 1 further attendee |
| 2 | Regional Membership Status | Lynda / Tanith |
• Now 424 region 6 members in UK/Ireland (as of 28/02/26, was 384 at last AGM in Jan 2025) • Update on PMSF International from Lynda |
| 3 | List of achievements in 2025 | Alison / Lynda |
• Summary of achievements 2024-2025 noted |
| 4 | Review and approval of accounts | Tanith | • Draft accounts presented for review – and will go forward now to be presented for Independent Examination and submitted to Charity Commission before the deadline of July 2026. |
| 5 | Presented for agreement: a. Confirmation of Charity Objectives b. Confirmation of trustees and additional volunteers c. Plans for 2026/27 |
Alison / Lynda |
• Charity objectives, policies remain the same. • Trustees Confirmed. • Plan to continue existing activities. • A UK wide Family Day will be planned for 2027 |
| 6 | Any other business | Alison to chair |
• Research update including nasal insulin clinical trial provided by Katie Greed • PMS GO • Agreed to update PMSF UK website with guidance, explanations of new organisations and clinical research in the PMS global community. |
| 7 | Closing | Alison | • Alison closed the meeting |
2
Agenda Item 3: Key achievements for 2024-2025
Section D
Achievements and Performance – to 30Sep-2025
Our community has grown to 424 people registered in the UK and Ireland now. As a reminder, it was just over 100 when we began as a registered charity in 2014. Highlights for this financial year include:
-
Our successful Family Day in May 2025 – our largest event ever, attended by 62 families and over 300 people participating on the day
-
Held a regional family day in Ireland with 15 families.
-
Continued financial Awards to families – over 100 payments made in the last financial year. Over the last 10 yrs the charity has awarded just under £390,000 to families through our awards programme.
-
Engaged with Kings College London team on arrangements for planned nasal insulin trial. Over 100 participants expected between ages of 3yrs-18yrs.
-
Successful year of fundraising, including our best ever year on JustGiving
-
A fantastically well-supported Christmas jumper campaign in December 2025
-
Attended an international PMS drug development and scientific conference in Barcelona, focusing on medical research and global engagement.
-
Over 700 Facebook page followers
3
Agenda Item 3: A few highlights of our PMSF UK year from our social media channels
4
Agenda Item 4: Financial Highlights for 2024-25
- 2025 was another year of great fundraising – which enabled the charity to fund both awards and a UK wide family day. PMSF UK is into its 2[nd] decade as a charity on a really strong financial foundation…
5
Agenda Item 4: Financial Results Detail Will be submitted for Independent Examination and then to Charity Commission
The charity has a strong financial foundation which allows it to continue its work to support families:
-
Over 100 awards made to families
-
Fully-funded UK Family Day in London with over 300 participants
-
A record-breaking amount for JustGiving fundraising
We continue to manage our out-goings carefully to keep operating costs low.
----- Start of picture text -----
This Year (2025) This Year (2024)
1-Oct-24 to 30-Sep-25 1-Oct-23 to 30-Sep-24
Cash
Opening cash balance £59,524.91 £100,003.06
Closing cash balance [bank & PayPal] £70,086.96 £59,524.91
Receipts £64,699.59 £63,259.45
Donations £60,121.09 £57,404.42
Restricted funds (1)
Direct (2) £19,987.91 £19,966.20
JustGiving £38,880.35 £35,950.75
VirginGiving [Closed now] £0.00 £0.00
FaceBook £0.00 £44.03
Amazon £0.00 £0.00
PayPal £833.96 £1,029.92
Benevity £212.77 £372.07
EasyFundraising £206.10 £41.45
Sales of merchandise (3) £4,578.50 £5,855.03
Sales of merchandise (Bank credits) £4,578.50 £3,589.63
Sales of merchandise (PayPal) £0.00 £2,265.40
Payments -£54,137.54 -£103,737.60
Awards to PMSF families -£28,247.00 -£57,702.00
Awards Programme (excl. Travel) -£28,047.00 -£57,702.00
Travel awards -£200.00
Research Awards (to US Foundation)
Donation to PMSF (US Foundation)
International Foundation -£4,314.44
Conference attendance -£2,150.33
Website costs -£516.42 -£731.70
Event costs (incl. Family Days) -£13,325.64 -£23,889.68
Purchase of Charity Event Places £0.00 -£444.00
Purchase of merchandise -£5,911.90 -£7,783.66
Purchase of printed leaflets -£825.00
Postal expenses -£535.04 -£507.11
JustGiving & Virgin costs -£561.60 -£561.60
Other expenses (4) (incl. website from 2023) -£2,889.61 -£6,978.41
6
----- End of picture text -----
Agenda Item 4: 2024-25 Donations Summary
-
Total donations of £60,000 in total – from the following sources:
-
£39,000 raised via JustGiving consisting of over 1,200 individual donations made via the platform
-
£20,000 received from > 50 direct donations
-
£1,250 via other platforms (PayPal, Benevity, 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 achievements and fundraising donations from 2024-25
-
✓ Reese Newbury & Team Opus
-
✓ Craig O’Reilly London Marathon 2025
-
✓ Joel Russell Tough Mudder
-
✓ Bryony Blackburn
-
✓ Natalie Lingard & Penny Morby Lake District Ultra Challenge
-
✓ Matthew Tompkinson, Alex Wherry 72 Holes of Golf
-
✓ Collinson Family
-
✓ West Family
-
✓ Lauren Harvey Manchester Marathon
-
✓ Kay Family
-
✓ Jessica Ware Walking the Sandstone Trail
-
✓ Townsend Family
-
✓ David Atkins Great North Swim
-
✓ Louth Golf Club
-
✓ Nicky Murray Cycling 112 miles
-
✓ Ruddock Family
-
✓ Eva Loth
-
✓ Peter Austin Photography
-
✓ Andy Kulina
7
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 and additional volunteers |
• Katie Greed and Natalie Lingard confirmed as Trustees • Renewal of 3 year Trustee term for Lynda White • For completeness, will mean 6 trustees: Alison Turner, Lynda White , Natalie James, Tanith Sherwood , Katie Greed, Natalie Lingard • Peter Greene and Becky James confirmed as Co-Regional Reps • Suzy Kew-Moss and Rebecca Ecclestone added as Volunteers |
| c. Review of Charity Policies |
• No change to the charity’s Policies |
| d. Plans for 2026/2027 | • Plan to continue existing activities (building awareness, regional family days, focus on awards to PMS families, donate to & support research) • A UK wide Family Day will be planned for 2027 |
8
Phelan-McDermid Syndrome Foundation UK (PMSF UK)
Independent Examiner's Report to the Trustees For The Year To 30 September 2025
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 2025. 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: 22 July 2026