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|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|
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|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,||
||||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||
||||mana~in
TSC.||
|Professor||ardiff|nderstanding
the limits ofeverolimus
and rapamycin||
|Andrew Tee||niversity|his project is investigating
the limits ofeverolimus
and||
||||rapamycin,
specifically,
why these treatments
are not 100%||
||||effective and why not all TSC tumours
respond to treatment||
||||ith them. The team are currently
examining
how TSC||
||||umour cells in the lab respond to a series ofnew drugs
in||
||||clinical development
and will compare the effects with||
||||existing treatments.
It is hoped that this research will help to||
||||find better and more effective treatments
for TSC
atients.||
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|OBJECTIVES AND|ACTIVITIES|||
|---|---|---|---|
|r Charlotte Tye|ings College|Designing
a protocol to measure the developmental||
||ondon|trajectory ofinfants with Tuberous
Sclerosis||
|||The EDiTS study team have developed
a home-based||
|||assessment
to better monitor
and understand
social and non-||
|||social attention
in toddlers with TSC.This early intervention||
|||solution already indicated
a dramatic
improvement
in social||
|||ehaviour
linked to autism spectrum
disorder. The EDiTS||
|||study is ongoing
and aims to pave the way for the design of||
|||ore early interventions
to improve
the long-term
quality of||
|||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||
|||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-||
|||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,||
|||including
agreement
on suitable clinical guidelines
for||
|||TAND. Following
work in identifying
and treating TAND,||
|||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.||
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||||||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|
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||||||||||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|
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|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|
##
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|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|
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