| Page | |||
|---|---|---|---|
| Report ofthe Trustees | 1 | to | 16 |
| Independent Examiner's Report |
17 | ||
| Statement ofFinancial Activities | 18 | ||
| Balance Sheet | |||
| Notes to the Financial Statements | 20 | to | 28 |
| Detailed Statement ofFinancial Activities | 29 | to | 30 |
| The TSA's research | The TSA's research | portfolio ofpreviously | committed grants in 2022 consists of9 live grants (6 ofwhich |
are jointly |
|---|---|---|---|---|
| funded). | Our portfolio ofongoing projects | is worth f473,073.51. | ||
| Investi | ator | Institution | Title and ur ose of rant Co-funder |
|
| rElaine Dunlop | ardiff | Characterising the role ofexosomes in TSC |
||
| niversity | We know that TSCcysts surround and hijack healthy cells, |
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| in turn helping the cysts grow. This project plans to | ||||
| ollaborate with world leading TSC experts to help better |
||||
| understand exactly how TSC cysts communicate with |
||||
| healthy cells. It is hoped that this research could help to | ||||
| eveal new ways ofpreventing TSC cysts from growing, |
||||
| hereby helping to develop better strategies for treating and |
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| mana~in TSC. |
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| Professor | ardiff | nderstanding the limits ofeverolimus and rapamycin |
||
| Andrew Tee | niversity | his project is investigating the limits ofeverolimus and |
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| rapamycin, specifically, why these treatments are not 100% |
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| effective and why not all TSC tumours respond to treatment |
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| ith them. The team are currently examining how TSC |
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| umour cells in the lab respond to a series ofnew drugs in |
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| clinical development and will compare the effects with |
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| existing treatments. It is hoped that this research will help to |
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| find better and more effective treatments for TSC atients. |
| OBJECTIVES AND | ACTIVITIES | ||
|---|---|---|---|
| r Charlotte Tye | ings College | Designing a protocol to measure the developmental |
|
| ondon | trajectory ofinfants with Tuberous Sclerosis |
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| The EDiTS study team have developed a home-based |
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| assessment to better monitor and understand social and non- |
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| social attention in toddlers with TSC.This early intervention |
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| solution already indicated a dramatic improvement in social |
|||
| ehaviour linked to autism spectrum disorder. The EDiTS |
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| study is ongoing and aims to pave the way for the design of |
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| ore early interventions to improve the long-term quality of |
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| life for atients with TSC. |
|||
| rElaine Dunlop | ardiff niversity |
model ofcell invasion in TSC-LAM One ofthe current priorities in TSCresearch is to develop a |
SMinistry fDefence |
| model ofthe human circulatory system using human cells, so |
|||
| hat scientists can study LAM in more detail. LAM (or | |||
| 'lymphangioleiomyomatosis') is a condition affecting around |
|||
| 35-40'Jooffemales who live with TSC.LAM is caused by | |||
| SC cells moving &om different parts ofthe body to the | |||
| lungs, causing cysts. This new project aims to create aLAM | |||
| model. Ifthe research is successful, it will give scientists a |
|||
| better understanding ofwhy TSCLAM happens and why |
|||
| some cells invade the lun s whilst others do not. |
|||
| Dr Sam Amin | University of | Better understanding the accessibility ofmental health |
nonymous |
| and Dr Ingram | ristol | ervices for children and young people with TSC |
najor donor |
| Wright | his project aims to develop an understanding ofappropriate |
||
| and effective ways for children and young people with TSC |
|||
| o access available mental health services and psychological |
|||
| support in the UK. This research hopes to demonstrate a |
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| clear benefit ofproviding therapies to children and young |
|||
| people with TSC who are experiencing psychological or |
|||
| emotional distress. |
|||
| rofessor Petrus | University of | eTANDem Project | ing |
| deVries and | ape Town and | The TANDem Project brings together a worldwide team of |
audouin |
| rofessor Anna | UZ Brussels | families affected by TSC,researchers and clinicians to |
oundation |
| Jansen | provide scientific evidence for greater intervention and |
||
| treatment ofTSC Associated Neuropsychiatric Disorders |
|||
| (such as anxiety, depression and aggressive behaviour). The |
|||
| o-part project will first focus on the development ofa self- |
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| report TAND checklist and identification smartphone app, to |
|||
| easure how people are affected by TAND. The second part | |||
| ofthe study will investigate the best ways to treat TAND, |
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| including agreement on suitable clinical guidelines for |
|||
| TAND. Following work in identifying and treating TAND, |
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| the TANDem Project will prepare a global team ofTAND | |||
| researchers to raise awareness and lead future research into |
|||
| TAND. | |||
| s Shoba | uiversity of | AND in India | |
| Srivastava | ape Town | The PhD project will ask families who live with TSCand | |
| clinicians who support families what they know about |
|||
| TAND, what their TAND needs are and what their priorities | |||
| ould be for actions in India. It will then examine how | |||
| useful the self-complete quantified version ofthe TAND |
|||
| hecklist (TAND-SQ) and the TAND Toolkit (draft) App are | |||
| for Indian families. Finally, it will run a short caregiver |
|||
| vellbeing programme to see how useful and relevant it may |
|||
| be to TSC families in India. |
| 2022 | 2021 | |||||
|---|---|---|---|---|---|---|
| Unrestricted | Restricted | Total | Total | |||
| funds | funds | funds | funds | |||
| Notes | ||||||
| INCOME AND ENDOWMENTS FROM | ||||||
| Donations and legacies |
236,732 | 4,500 | 241,232 | 344,236 | ||
| Charitable activities |
||||||
| Research | 22,000 | 22,000 | 77,969 | |||
| Other trading activities | 3,668 | 3,668 | 6,290 | |||
| Investment income |
17,740 | 17,740 | 14,959 | |||
| Total | 280,140 | 4,500 | 284,640 | 443,454 | ||
| EXPENDITURE ON | ||||||
| Raising funds | 84,558 | 84,558 | 127,006 | |||
| Charitable activities |
||||||
| Family Care &Support | 163,661 | 4,500 | 168,161 | 162,472 | ||
| Research | 106,330 | 106,330 | 186,889 | |||
| Total | 354,549 | 359,049 | 476,367 | |||
| Net gains/(losses) on investments |
(87,971) | (87,971) | 52,835 | |||
| NET INCOME/(EXPENDITURE) | (162,380) | (162,380) | 19,922 | |||
| RECONCILIATION | OF FUNDS | |||||
| Total funds brought forward | 992,091 | 992,091 | 972,169 | |||
| TOTAL FUNDS CARRIED FORWARD | 829,711 | 829,711 | 992,091 |
| 2022 | 2021 | |||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Portfolio management | charges | 4,767 | 8,307 | |||||||
| GRANTS PAYABLE | ||||||||||
| 2022 | 2021 | |||||||||
| Research | 183 | 27,848 | ||||||||
| The total grants paid to | institutions | during | the year was as | follows: | ||||||
| 2022 | 2021 | |||||||||
| *University ofBristol | NHS Foundation | Trust - Randomised | Controlled | Trial | ||||||
| ofAcceptance and Commitment |
Therapy | in the Tuberous | Sclerosis Complex | 183 | 30,000 | |||||
| *TANDem Consortium | 26,289 | |||||||||
| *Centre for Integrative | Psysiology, | University ofEdinburgh | (335) | |||||||
| *University ofBirmingham | (3,499) | |||||||||
| *Institute ofPsychiatry, | Kings | College London | ~24,607) | |||||||
| 183 | 27,848 |
| SUPPORT COSTS | |||
|---|---|---|---|
| Governance | |||
| Other | costs | Totals | |
| Family Care &Support | 14,099 | 5,527 | 19,626 |
| Research | 9,505 | 5,527 | 15,032 |
| 23,604 | 11,054 | 34,658 |
| STAFF COSTS | |||||
|---|---|---|---|---|---|
| 2022 | 2021 | ||||
| Wages and salaries | 204,113 | 246,355 | |||
| Social security costs | 16,360 | 16,907 | |||
| Other pension costs | 11,013 | 17,053 | |||
| 231,486 | 280,315 | ||||
| The average monthly | number ofemployees | during the year was as follows: | |||
| 2022 | 2021 | ||||
| Fundraising | 1 | 3 | |||
| Family Support and | Communications | 4 | 4 | ||
| Research | 2 | 3 | |||
| 10 | |||||
| No employees received emoluments |
in excess off60,000. | ||||
| COMPARATIVES | FORTHE STATEMENT OF FINANCIAL ACTIVITIES | ||||
| Unrestricted | Restricted | Total | |||
| funds | funds | funds | |||
| INCOME AND ENDOWMENTS | FROM | ||||
| Donations and legacies |
344,236 | 344,236 | |||
| Charitable activities |
|||||
| Research | 77,969 | 77,969 | |||
| Other trading activities |
6,290 | 6,290 | |||
| Investment income |
14,959 | 14,959 | |||
| Total | 443,454 | 443,454 | |||
| EXPENDITURE ON | |||||
| Raising funds | 127,006 | 127,006 | |||
| Charitable activities |
|||||
| Family Care &Support | 162,472 | 162,472 | |||
| Research | 186,889 | 186,889 |
| THE TUBEROUS SCLEROSIS ASSOCIATION | THE TUBEROUS SCLEROSIS ASSOCIATION | THE TUBEROUS SCLEROSIS ASSOCIATION | ||||
|---|---|---|---|---|---|---|
| Notes to the Financial Statements - continued | ||||||
| for the year ended 31December 2022 | ||||||
| COMPARATIVES FOR THE | STATEMENT OF FINANCIAL ACTIVITIES - continued | |||||
| Unrestricted | Restricted | Total | ||||
| funds | funds | funds | ||||
| Total | 476,367 | 476,367 | ||||
| Net gains on investments | 52,835 | 52,835 | ||||
| NKT INCOME | 19,922 | 19,922 | ||||
| RECONCILIATION | OF FUNDS | |||||
| Total funds brought forward |
972,169 | 972,169 | ||||
| TOTAL FUNDS CARRIED FORWARD | 992,091 | 992,091 | ||||
| 10. | INTANGIBLE FIXEDASSETS | |||||
| Database | ||||||
| costs | ||||||
| COST | ||||||
| At 1 January 2022 and | 31December 2022 | 19,624 | ||||
| AMORTIS ATION |
||||||
| At 1 January 2022 and | 31December 2022 | 19,624 | ||||
| NET BOOK VALUE | ||||||
| At 31December 2022 | ||||||
| At 31December 2021 | ||||||
| 11. | TANGIBLE FIXED | ASSETS | ||||
| Fixtures | ||||||
| and | ||||||
| fittings | ||||||
| COST | ||||||
| At 1 January 2022 and | 31December 2022 | 1,135 | ||||
| DEPRECIATION | ||||||
| At 1 January 2022 and | 31 December 2022 | 1,135 | ||||
| NKT BOOKVALUE | ||||||
| At 31December 2022 | ||||||
| At 31 December 2021 |
| 2022 | 2021 | |||||
|---|---|---|---|---|---|---|
| Shares | 628,541 | 562,003 | ||||
| Brewin Dolphin capital | account | 14,166 | 344,720 | |||
| 642,707 | 906,723 | |||||
| Additional information |
as | follows: | ||||
| Listed | ||||||
| investments | ||||||
| MARKET VALUE | ||||||
| At 1 January 2022 | 562,003 | |||||
| Additions | 346,517 | |||||
| Disposals | (192,008) | |||||
| Revaluations | ~87,971) | |||||
| At 31December 2022 | 628,541 | |||||
| NET BOOKVALUE | ||||||
| At 31December 2022 | 628,541 | |||||
| At 31December 2021 | 562,003 | |||||
| There were no investment | assets outside the UK. | |||||
| The historical costofthe investments | at the year end is f597,504 (2021 f367,751). | |||||
| Investments (neither listed |
nor unlisted) were as follows: |
|||||
| 2022 | 2021 | |||||
| Brewin Dolphin capital | account | 14,166 | 344,720 | |||
| 13. | DEBTORS:AMOUNTS | FALLING | DUE WITHIN ONE YEAR | |||
| 2022 | 2021 | |||||
| Other debtors | 1,502 | 15,133 | ||||
| Prepayments | 1,883 | 75,607 | ||||
| 3,385 | 90,740 |
| each grant. Further detail in respect ofeach gr | ant is given in note | 5. | |||
|---|---|---|---|---|---|
| At 1.1.22 | SOFA | Paid | At 31.12.22 | ||
| Institute ofMedical Genetics, Cardiff Cardiff University |
1,371 618 |
1,371 618 |
|||
| ~ Research Department ofGenetics, |
|||||
| University College, London *University ofManchester, Faculty of |
513 | 513 | |||
| Life Sciences | 226 | 226 | |||
| *Erasmus MC, Department ofClinical | |||||
| Genetics | 180 | 180 | |||
| *University College London - The TSCI |
|||||
| and TSC2 Variation Databases |
228 | 228 | |||
| *Whitehead Institute - Towards specific |
|||||
| Motor Inhibitors capable ofrescuing |
|||||
| Tuberous Sclerosis Complex loss-of- |
|||||
| function | 185 | 185 | |||
| *Cardiff University -Targeting the |
|||||
| Refl/STAT3 axis to treat Tuberous |
|||||
| Sclerosis Complex *Cardiff University -Characterising the |
14,931 | 9,762 | 5,169 | ||
| roles ofexosomes in Tuberous Sclerosis |
|||||
| Complex *University ofBristol NHS Foundation |
10,030 | 9,410 | 620 | ||
| Trust - Randomised Controlled Trial of |
|||||
| Acceptance and Commitment Therapy in |
|||||
| Tuberous Sclerosis Complex *Institute ofPsychiatry Psychology and |
63,095 | 183 | 26,256 | 37,022 | |
| Neuroscience - Neurocognitive predictors |
|||||
| ofneurodevelopmental impairment in |
|||||
| infants and toddlers with TSC |
2,517 | 2,450 | 67 | ||
| ~ Cardiff University -An innovative model |
|||||
| system to cell invasion in TSC/LAM to |
|||||
| uncover new drug targets and therapies | 21,435 | 21,370 | 65 | ||
| *TANDem Consortium -to fund a number |
|||||
| ofsmall seed projects linked to the | |||||
| TANDem project to help build research | |||||
| capacity in TAND. | 26,289 | 26,289 | |||
| 141,618 | 95,537 | 46,264 |
| MOVE | ME | N | T IN FUN | DS | ||||
|---|---|---|---|---|---|---|---|---|
| Net | Transfers | |||||||
| At 1.1.22 | movement | between | At 31.12.22 | |||||
| in funds | funds | |||||||
| Unrestricted | funds | |||||||
| General | fund | 108,969 | (85,922) | 276,953 | 300,000 | |||
| Designated | Endowment | Fund | 883,122 | (76,458) | (276,953) | 529,711 | ||
| 992,091 | (162,380) | 829,711 | ||||||
| TOTAL | FUNDS | 992,091 | (162,380) | 829,711 | ||||
| Net movement | in funds, | included | in the above are as follows: | |||||
| Incoming | Resources | Gains and | Movement | |||||
| resources | expended | losses | in funds | |||||
| Unrestricted | funds | |||||||
| General fund Designated Endowment |
Fund | 266,899 17,740 |
(354,099) ~6,228) |
~94,495) | (87,200) (82,983) |
|||
| 284,639 | (360,327) | (94,495) | (170,183) | |||||
| TOTAL | FUNDS | 284,639 | ~360,327) | ~94,495) | (170,183) |
| Net | |||||
|---|---|---|---|---|---|
| movement | At | ||||
| At 1.1.21 | in funds | 31.12.21 | |||
| Unrestricted | funds | ||||
| General fund | 120,686 | (11,717) | 108,969 | ||
| Designated | Endowment | Fund | 851,483 | 31,639 | 883,122 |
| 972,169 | 19,922 | 992,091 | |||
| TOTAL FUNDS | 972,169 | 19,922 | 992,091 |
| Incoming | Resources | Gains and | Movement | |||
|---|---|---|---|---|---|---|
| resources | expended | losses | in funds | |||
| Unrestricted | funds | |||||
| General fund | 428,495 | (440,212) | (11,717) | |||
| Designated | Endowment | Fund | 14,959 | ~36,3663 | 52,835 | 31,639 |
| 443,454 | ~476, 673 | 52,835 | 19,922 | |||
| TOTAL FUNDS | 443,454 | (476,367) | 52,835 | 19,922 |