| England | & | Wa/es | Chan'ty registration | Chan'ty registration | Chan'ty registration | number. | 1144406 | |||
|---|---|---|---|---|---|---|---|---|---|---|
| Scotland | Charity | registration | number. | SC045407 | ||||||
| Company | registration | number: | 07775835 | |||||||
| Trustees | (Directors): | Helen Carter (Co-Chair) | ||||||||
| Joella Melville (Co-Chair) | ||||||||||
| Dr William Evans | (Resigned | as Chair, November | 2022) | |||||||
| Dave Roberts | ||||||||||
| Janice Brooks | ||||||||||
| Bill Owen | ||||||||||
| Dr David Holton | ||||||||||
| Jacqueline Imrie |
||||||||||
| Fiona Donne | ||||||||||
| Thomas Kirkegaard | ||||||||||
| Chief Executive: | Toni Mathieson | |||||||||
| Co-opted | Members: | Claire Fyvie | ||||||||
| Prof. Frances Platt | ||||||||||
| Anthony Mead-Wynne |
||||||||||
| Bankers: | HSBC | |||||||||
| 33Town Square, | ||||||||||
| Basildon, Essex | ||||||||||
| SS141BA | ||||||||||
| Investment | Managers: | Investec Wealth | & Investment | Limited | ||||||
| 5 George Square | ||||||||||
| Glasgow | ||||||||||
| G2 1DY | ||||||||||
| Independent | Examiners: | James Anderson | &Co | |||||||
| Pentland Estate |
||||||||||
| Straiton | ||||||||||
| Edinburgh | ||||||||||
| EH20 9QH | ||||||||||
| Registered | address: | Suite 2 Vermont | House | |||||||
| Concord | ||||||||||
| Washington | ||||||||||
| Tyne &Wear | ||||||||||
| NE37 2SQ |
| Unrestricted | Restricted | Endowment | Total | ||||
|---|---|---|---|---|---|---|---|
| Notes | Funds | Fund | Fund | Funds | 2022 | ||
| 6 | 8 | 6 | 6 | 6 | |||
| Income and endowments | from: | ||||||
| Donations and legacies |
101,425 | 4,000 | 105,425 | 76,315 | |||
| Charitable activities |
10,991 | 75,215 | 86,206 | 228,718 | |||
| Other trading activities |
108,370 | 108,370 | 106,893 | ||||
| Investments | 6,593 | 6,593 | 4,477 | ||||
| Total income | 227,379 | 79,215 | 306,594 | 416,403 | |||
| Expenditure on: |
|||||||
| Raising funds | 16,454 | 16,454 | 11,754 | ||||
| Charitable activities |
7 | 254,146 | 169,772 | 423,918 | 326,073 | ||
| Total expenditure | 270,600 | 169,772 | 440,372 | 337,827 | |||
| Net income Iexpenditure | before | ||||||
| losses on investments | (43,221) | (90,557) | (133,778) | 78,576 | |||
| Net gains I(losses) on investments | (16,400) | (16,400) | (9,157) | ||||
| Net movement in funds |
(43,221) | (90,557) | (16,400) | (150,178) | 69,419 | ||
| Reconciliation offunds: |
|||||||
| Total funds brought forward |
265,692 | 92,557 | 218,333 | 576,582 | 507,163 | ||
| Total funds carried forward | 15 | 222,471 | 2,000 | 201,933 | 426,404 | 576,582 |
| Balance Sheet | |||
|---|---|---|---|
| As at 30April 2023 | |||
| Notes | 2023 F |
2022f | |
| Fixed Assets | |||
| Tangible fixed assets | |||
| Investments | 201,933 | 218,333 | |
| 201,933 | 218,333 | ||
| Current Assets | |||
| Debtors | 10 | 11,613 | 5,175 |
| Bank &cash | 227,489 | 373,147 | |
| 239,102 | 378,322 | ||
| Creditors | |||
| Amounts falling due within one year |
14,631 | 20,073 | |
| Net Current Assets | 224,471 | 358,249 | |
| Net Assets | 426,404 | 576,582 | |
| Funds | 15 | ||
| General fund |
210,305 | 241,360 | |
| Designated fund |
12,166 | 24,332 | |
| Unrestricted funds |
222,471 | 265,692 | |
| Endowment fund |
201,993 | 218,333 | |
| Restricted funds |
2,000 | 92,557 | |
| 426,404 | 576,582 |
| 2023 | 2022 | ||
|---|---|---|---|
| Income from donations | &legacies | 6 | 6 |
| General fund - unrestn'cted | |||
| Conference income and grants |
64,993 | 23,295 | |
| Voluntary donations |
36,432 | 49,020 | |
| Restricted fund | |||
| Voluntary donations |
4,000 | 4,000 | |
| 105,425 | 76,315 |
| without any control or infl |
uen | ce over the content ofthe | programme or the selection ofs |
peakers. |
|---|---|---|---|---|
| 2023 | 2022 | |||
| Income from charitable | activities | F | 6 | |
| General fund - unrestricted | ||||
| Kickstart | 10,990 | 3,120 | ||
| Restricted fund |
||||
| Charities Aid Foundation |
41,472 | 129,417 | ||
| National Lottery Community |
Fund | 9,827 | ||
| Big Lottery Fund | ||||
| BBCChildren in Need |
31,743 | 20,491 | ||
| Hollie Foundation | 2,000 | 11,063 | ||
| Pears Foundation | 9,800 | |||
| Orphazyme | 45,000 | |||
| 86,205 | 228,718 | |||
| Income from other trading | activities | |||
| General fund - unrestricted | ||||
| Fundraising events |
108,370 | 106,893 | ||
| Investment income |
||||
| General fund - unrestricted | ||||
| Bank interest | 1,487 | 49 | ||
| Dividend income |
5,106 | 4,428 | ||
| 6,593 | 4,477 |
| 2023 | 2022 | |||||
|---|---|---|---|---|---|---|
| Expenditure on charitable |
activities | F | ||||
| Helpline / family support |
/ travel | 137,287 | 129,640 | |||
| Information -social media |
& | publications | 47,332 | 38,861 | ||
| Conference costs | 71,562 | 2,690 | ||||
| Research costs | 37,785 | 53,931 | ||||
| Central office wages | 73,113 | 70,358 | ||||
| Upkeep computer | 977 | 594 | ||||
| Rent &rates | 12,042 | 11,086 | ||||
| Other administration | costs | 14,503 | 12,420 | |||
| Insurance & subscription |
2,932 | 2,120 | ||||
| Bank charges | 188 | 186 | ||||
| Executive &management | meetings | 5,135 | ||||
| Strategic review meeting | 15,844 | 1,110 | ||||
| Independent examiner's |
fee | 2,520 | 1,800 | |||
| Management &staff |
meetings | 2,696 | 1,277 | |||
| 423,918 | 326,073 | |||||
| Charged to - General | fund | - | unrestricted | 254,146 | 182,212 | |
| -Restricted | fund | 169,772 | 143,861 | |||
| Tangible assets | ||||||
| Equipment | ||||||
| F | ||||||
| Cost | ||||||
| At 30 April 2022 and | 2023 | 4,158 | ||||
| Depreciation | ||||||
| At 30 April 2022 and | 2023 | 4,158 | ||||
| Net Book Value | ||||||
| At 30 April 2022 and | 2023 | |||||
| 2023 | 2022 | |||||
| Fixed asset investments | 6 | 6 | ||||
| Balance brought forward |
218,333 | 227,490 | ||||
| (Impairment) / Increase |
in | value | (16,400) | (9,157) | ||
| Market value at 30 April | 2023 | 201,933 | 218,333 | |||
| Historical cost of investments | ||||||
| held at 30 April 2023 | 220,000 | 220,000 | ||||
| Investments at fair value |
comprise: | |||||
| 2023 | ||||||
| Fixed interest | 32.32% | |||||
| Securities | 3475% | |||||
| Property | 8.69% | |||||
| Alternatives | 19.68% | |||||
| Cash | 4 57% |
| The total minimum future lease payments under non-cancel |
lable operating leases are a |
s follows: |
|---|---|---|
| 2023f | 2022f | |
| Expiry date | ||
| Not later than one year | 10,800 | 10,800 |
| Later than one and not later than five years | 12,600 | 1,500 |
| 23,400 | 12,300 |
| Balance | Gains | / | Balance | ||||||
|---|---|---|---|---|---|---|---|---|---|
| 2022-2023 | 30/4/2022f | Income F. |
Expenditure F |
Transfer 6 |
(Losses) 6 |
30/4/2023 6 |
|||
| General fund |
241,360 | 227,379 | 270,600 | 12,166 | 210,305 | ||||
| Designated fund |
24,332 | (12,166) | 12,166 | ||||||
| Total unrestricted | funds | 265,692 | 227,379 | 270,600 | 222,471 | ||||
| Endowment fund |
218,333 | (16,400) | 201,933 | ||||||
| Restricted funds | |||||||||
| SBCChildren in Need |
31,743 | 31,743 | |||||||
| Charities Aid Foundation |
1 | 65,490 | 36,472 | 101,962 | |||||
| Charities Aid Foundation |
2 | 8,975 | 5,000 | 13,975 | |||||
| Stewardship Fund |
3,000 | 3,000 | |||||||
| Hollie Foundation | 2,000 | 2,000 | |||||||
| Lesley Carlton Jones | 2,000 | 1,000 | 1,000 | 2,000 | |||||
| Orphazyme | 16,092 | 16,092 | |||||||
| Total restricted funds | 92,557 | 79,215 | 169,772 | 2,000 | |||||
| Total funds | 576,582 | 306,594 | 440,372 | (16,400) | 426,404 | ||||
| Balance | Gains | / | Balance | ||||||
| 2021-2022 | 30/4/2021f | Income F. |
Expenditure F |
Transfer 6 |
(Losses) 6 |
30/4/2022 6 |
|||
| General fund |
199,677 | 186,805 | 193,966 | 48,884 | 241,360 | ||||
| Designated fund |
73,176 | (48,844) | 24,332 | ||||||
| Total unrestricted | funds | 272,853 | 186,805 | 193,966 | 265,692 | ||||
| Endowment fund |
227,490 | (9,157) | 218,333 | ||||||
| Restricted funds | |||||||||
| Big Lottery Fund | 5,820 | 5,820 | |||||||
| National Letter Community | Fund | 9,827 | 9,827 | ||||||
| SBCChildren in Need |
20,491 | 20,491 | |||||||
| Charities Aid Foundation |
1 | 109,417 | 43,927 | 65,490 | |||||
| Charities Aid Foundation |
2 | 10,000 | 1,025 | 8,975 | |||||
| Charities Aid Foundation |
3 | 10,000 | 10,000 | ||||||
| Pears Foundation | 9,800 | 9,800 | |||||||
| Stewardship Fund |
3,000 | 3,000 | |||||||
| Hollie Foundation | 11,063 | 11,063 | |||||||
| Lesley Carlton Jones | 1,000 | 1,000 | 2,000 | ||||||
| Orphazyme | 45,000 | 28,908 | 16,092 | ||||||
| Total restricted funds | 6,820 | 229,598 | 143,861 | 92,557 | |||||
| Total funds | 507,163 | 416,403 | 337,827 | (9,157) | 576,582 |
| Big Lottery Fund | Shaping | our future together | |||||||
|---|---|---|---|---|---|---|---|---|---|
| National Lottery Community |
Fund | Mental health &wellbeing |
|||||||
| BBCChildren in Need |
Continuation funding towards the post |
of Clinical Nurse | Specialist | ||||||
| Charities Aid Foundation |
1 | Towards | continuation and development |
ofservices | |||||
| Charities Aid Foundation |
2 | Towards | strengthening organisation |
||||||
| Charities Aid Foundation |
3 | Towards | core salaries | ||||||
| Pears Foundation | Covid-19 | funding for salary costs, overheads |
&family support | ||||||
| Stewardship fund |
Research | ||||||||
| Hollie Foundation | Funding | of Family Officer | |||||||
| Lesley Carlton Jones | Peter Carlton Jones award | ||||||||
| Orphazyme | Towards | the collection of patient |
evidence | to support | submissions | to | |||
| regulator | in support of drug efficacy |
| Unrestricted | Restricted | Endowment | Total | ||
|---|---|---|---|---|---|
| Funds | Funds | Funds | Funds | ||
| 6 | 6 | 6 | 6 | ||
| 2023 | |||||
| Fixed asset investments | 201,933 | 201,933 | |||
| Current | assets | 237,102 | 2,000 | 239,102 | |
| Current | liabilities | (14,631) | (14,631) | ||
| Net assets at 30 April 2023 | 222,471 | 2,000 | 201,933 | 426,404 | |
| Unrestricted | Restricted | Endowment | Total | ||
| Funds | Funds | Funds | Funds | ||
| 5 | 6 | 6 | 6 | ||
| 2022 | |||||
| Fixed asset investments | 218,333 | 218,333 | |||
| Current | assets | 285,766 | 92,557 | 378,323 | |
| Current | liabilities | (20,074) | (20,074) | ||
| Net assets at 30 April 2022 | 265,692 | 92,557 | 218,333 | 576,582 |
| The transactions | in the year and the year end balances are | as follows: | |
|---|---|---|---|
| 2023 | 2022 | ||
| 8 | 8 | ||
| With INPDA | |||
| Wages | 4,393 | 4,113 | |
| Other costs | 7,162 | 1,263 | |
| Reimbursement | ofresearch costs received | 8,611 | 7,170 |
| Sum due to NPUK (note 10) | 2,699 | 968 | |
| With INPDR | |||
| Wages | 11,113 | 11,073 | |
| Other costs | 3,365 | 3,622 | |
| Sum due to NPUK | 2,497 | 449 |