## ## ## ||||Page|| |---|---|---|---|---| |Report ofthe Trustees||1|to|17| |Independent
Examiner's|Report|||| |Statement ofFinancial|Activities|||| |Balance Sheet||20|to|21| |Notes to the Financial Statements||22|to|31| |Detailed Statement ofFinancial Activities||32|to|34| ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## |Live|ts|table|2021||||||| |---|---|---|---|---|---|---|---|---|---| |eference|||vestl|r|tution|ltle and
oseof
t|||o-ftmder| |016-POI|||Dr Martin||University of|xploiting Notch regulation toprobe alternative|||| ||||Baron||Manchester|echanisms ofTSCsi
lin|||| |2018-FOI|||Dr Kacper||Whitehead|dentifying
and creating more speci6c medicines|forTSC||| ||||Rogala||Institute-|his project focuses on research
into the structural|biology||| ||||||MIT|ofTSC and how this can help to identify
and create new and|||| |||||||more specific drugs to treat it.
It is hoped that the research|||| |||||||can contribute
towards
developing
a treatment
that would|||| |||||||provide
all the benefits ofrapamycin,
but without|its||| |||||||nwanted
long-term
side-effects.|||| |2018-S02|||Dr Elaine||Cardiff|haracter1sing
the role ofexosomes in TSC|||| ||||Dunlop||University|We know that TSC cysts surround
and hijack healthy||cells,|| ||||||Hospital|in turn helping
the cysts grow. This project plans|to||| |||||||collaborate
with world-leading
TSC experts to help better|||| |||||||nderstand
exactly how TSC cysts communicate|with||| |||||||ealthy cells.
It is hoped that this research could|help|to|| |||||||eveal new ways ofpreventing
TSC cysts from growing,|||| |||||||thereby helping to develop better strategies
for treating||and|| |||||||managing TSC.|||| ## ||THE TUB|EROUS SCLE|ROSISASSOCIATION (REGISTEREDNUMBER: 029001|07)|| |---|---|---|---|---|---| ||||Report ofthe Trustees||| ||||for the year ended 31December 2021||| |2018-S04|Professor|Cardiff|nderstanding
the limits ofeverolimus
and rapamycin||| ||ndrew|University|his project is investigating
the limits ofeverolimus
and||| ||ee|Hospital|apamycin,
specifically,
why
these
treatments
are
not||| ||||100'/o effective and why not all TSC tumours
respond
to||| ||||treatment
with them.
The team are currently
examining||| ||||how TSC tumour
cells in the lab respond
to a series of||| ||||new 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||| ||||reatments
for TSC patients.||| |2019-POI|Dr Elaine|Cardiff|A model ofcell invasion in TSC-LAM|US Ministry|of| ||unlop|University|One of the
current
priorities
in TSC research
is to|Defence|| ||||develop
a model ofthe human
circulatory
system
using||| ||||human
cells, so that scientists
can study LAM in more||| ||||detail.
LAM
(or
'lymphangioleiomyomatosis')
is
a||| ||||condition
affecting
around
35-40'/o of females
who live||| ||||with TSC. LAM is caused
by TSC cells moving
from||| ||||different
parts of the body to the lungs,
causing
cysts.||| ||||This new project aims to create a LAM model. If the||| ||||research
is successful,
it will
give
scientists
a better||| ||||understanding
of why
TSC LAM
happens
and
why||| ||||some cells invade the lungs whilst others do not.||| |019-P02|r Sam|University|Better understanding
the accessibility of mental
health|nonymous|major| ||Amin and|ofBristol|services for children and young people with TSC|donor|| ||Dr Ingram||This
project
aims
to
develop
an
understanding
of||| ||Wright||appropriate
and effective
ways for children
and young||| ||||people
with
TSC to access
available
mental
health||| ||||services
and
psychological
support
in the UK.
This||| ||||research
hopes
to
demonstrate
a
clear
benefit
of||| ||||providing
therapies
to children
and young
people
vvith||| ||||TSC who are experiencing
psychological
or emotional||| ||||distress.||| |2019-P03|Professor|University of|The TANDem Project|ing Baudouin|| ||etrus de|Cape Town|The TANDem Project brings together a worldwide
team|Foundation|| ||Vries and|and UZ|of families
affected
by TSC, researchers
and clinicians||| ||Professor|Brussels|to provide
scientific
evidence
for greater
intervention||| ||nna||and
treatment
of TSC Associated
Neuropsychiatric||| ||anssen||Disorders
(such as anxiety,
depression
and
aggressive||| ||||behaviour).
The two-part project will first focus on the||| ||||development
of a
self-report
TAND
checklist
and||| ||||identification
smartphone
app, to measure
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.||| ## ||||Report ofthe Trustees|Report ofthe Trustees||| |---|---|---|---|---|---|---| ||||forthe
ear ended 31December 2021|||| |2019-F01|Dr|K.ing's|Designing
a protocol
to measure
the
developmental|||| ||Charlotte|College|trajectory ofinfants with|Tuberous Sclerosis||| ||ye|London|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|behaviour
linked||to
autism| ||||spectrum
disorder.
The|EDiTS study
is ongoing
and||| ||||aims
to pave
the
way|for the
design
of|more
early|| ||||interventions
to improve|the long-term
quality||oflife for| ||||patients
with TSC.|||| ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ||fo|r the year end|ed 31December|2021||| |---|---|---|---|---|---|---| ||||||2021|2020| ||||Unrestricted|Restricted|Total|Total| ||||funds|funds|funds|funds| |||Notes||||| |INCOME AND ENDOWMENTS FROM||||||| |Donations
and legacies|||344,236||344,236|330,058| |Charitable
activities||||||| |Research|||77,969||77,969|| |Other trading activities|||6,290||6,290|2,884| |Investment
income|||14,959||14,959|34,308| |Other income||||||51,496| |Total|||443,454||443,454|418,746| |EXPENDITURE ON||||||| |Raising funds|||127,006||127,006|110,927| |Charitable
activities||||||| |Family Care &.Support|||162,472||162,472|246,864| |Research|||186,889||186,889|256,523| |Total|||476,367||476,367|614,314| |Net gains/(losses)
on|investments||52,835||52,835|(50,959)| |NET INCOME/(EXPENDITURE)|||19,922||19,922|(246,527)| |RECONCILIATION|OFFUNDS|||||| |Total funds brought forward|||972,169||972,169|1,218,696| |TOTAL FUNDS CARRIED FORWARD|||992,091||992,091|972,169| ## |||||2021|2020| |---|---|---|---|---|---| |||Unrestricted|Restricted|Total|Total| |||funds|funds|funds|funds| ||Notes||||| |FIXEDASSETS|||||| |Investments|13|906,723||906,723|960,594| |CURRENT ASSETS|||||| |Debtors||90,740||90,740|82,171| |Cash at bank||202,171||202,171|251,433| |||292,911||292,911|333,604| |CREDITORS|||||| |Amounts
falling due within one year|]5|(207,543)||(207,543)|(322,029)| |NET CURRENT ASSETS||85,368||85,368|11,575| |TOTAL ASSETSLESSCURRENT|||||| |LIABILITIES||992,091||992,091|972,169| |NETASSETS||992,091||992,091|972,169| |FUNDS|16||||| |Unrestricted
funds||||992,091|972,169| |TOTAL FUNDS||||992,091|972,169| ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ## ||OTHER TRADING A|CTIVITIES||| |---|---|---|---|---| ||||2021|2020| ||Christmas
cards k other sales||6,290|2,884| |3.|INVESTMENT INCOME|||| ||||2021|2020| ||Deposit account interest|||141| ||Income from managed|portfolio|14,959|34,167| ||||14,959|34,308| ## ## ## |RAISING FUNDS||||||||| |---|---|---|---|---|---|---|---|---| |INVESTMENT MANAGEMENT|COSTS|||||||| ||||||||2021|2020| |Portfolio management
charges|||||||8,307|8,496| |GRANTS PAYABLE||||||||| ||||||||2021|2020| |Research|||||||27,848|147,224| |The total grants paid to institutions|during the year was as follows:|||||||| ||||||||2021|2020| |~ Whitehead
Institute - Towards Specific Mtor||Inhibitors||Capable|ofRescuing|||| |Tuberous
Sclerosis Complex Loss-of-function||||||||51,000| |~ Cardiff University
-Targeting the|Refl/STAT3
axis||to|treat Tuberous||||| |Sclerosis Complex||||||||32,719| |~ Cardiff University
- Characterising|the Role|ofExosomes in Tuberous||||||| |Sclerosis
*Cardiff University
- An innovative|model system of||cell invasion||in|||32,712| |TSC/LAM to uncover new drug targets and therapies
*University ofBristol NHS Foundation
Trust - Randomised
Controlled||||||Trial of||30,793| |Acceptance
and Commitment
Therapy
in the Tuberous|||Sclerosis Complex||||30,000|| |*TANDem Consortium|||||||26,289|| |~Centre for Integrative
Psysiology,|University|ofEdinburgh|||||(335)|| |~University ofBirmingham|||||||(3,499)|| |~institute ofPsychiatry,
Kings College London|||||||(24,607)|| ||||||||27,848|147,224| ## ## ## |SUPPORT COSTS|||||| |---|---|---|---|---|---| |||||Governance|| ||Management|Finance|Other|costs|Totals| |Family Care k, Support|675|712|12,996|7,531|21,914| |Research||445|8,589|7,531|16,565| ||675|1,157|21,585|15,062|38,479| ## ## ## ## |||2021|2020| |---|---|---|---| |Wages|and salaries|246,355|298,750| |Social|security costs|16,907|26,928| |Other|pension costs|17,053|16,743| |||280,315|342,421| ## ## ## ## ||||2021|2020| |---|---|---|---|---| |Fundraising|||3|2| |Family Support
and Communications|||4|8| |Research||||3| ||||10|13| |No employees
received emoluments|in excess of%60,000.|||| |COMPARATIVES FORTHE STATEMENT OFFINANCIAL||ACTIVITIES||| |||Unrestricted|Restricted|Total| |||funds|funds|funds| |INCOME AND ENDOWMENTS FROM||||| |Donations
and legacies||304,058|26,000|330,058| |Other trading activities||2,884||2,884| |Investment
income||34,308||34,308| |Other income||51,496||51,496| |Total||392,746|26,000|418,746| |EXPENDITURE ON||||| |Raising funds||110,927||110,927| |Charitable
activities||||| |Family Care & Suppo&t||246,864||246,864| |Research||225,823|30,700|256,523| |Total||583,614|30,700|614,314| |Net gains/(losses)
on investments||(50,959)||(50,959)| |NET INCOME/(EXPENDITURE)||(241,827)|(4,700)|(246,527)| |RECONCILIATION
OFFUNDS||||| |Total funds brought forward||1,213,.996|4,700|1,218,696| |TOTAL FUNDSC~D FORWARD||972,169||972,169| ## |||THE TUBEROUS SCLEROSISASSOCIATION|THE TUBEROUS SCLEROSISASSOCIATION||| |---|---|---|---|---|---| |||Notes tothe Financiai Statements - continued|||| |||for the year ended 31December 2021|||| |11.|INTANGIBLE|FIXEDASSETS|||| ||||||Database| ||||||costs| ||COST||||| ||At 1 January 2021 and 31 December||2021||19,624| ||AMORTISATION||||| ||At
1 January 2021 and 31December||2021||19,624| ||NET BOOKVALUE||||| ||At 31 December|2021|||| ||At 31 December|2020|||| |12.|TANGIBLE FIXEDASSETS||||| ||||||Fixtures| ||||||and| ||||||fittings| ||COST||||| ||At
1 January 2021 and 31 December||2021||1,135| ||DEPRECIATION||||| ||At I January 2021 and 31 December||2021||1,135| ||NETBOOKVALUE||||| ||At 31December|2021|||| ||At 31December|2020|||| |13.|FIXEDASSET|INVESTMENTS|||| |||||2021|2020| ||Shares|||545,214|570,319| ||Brewin Dolphin|capital account||361,509|390,275| |||||906,723|960,594| ## ## ||Listed| |---|---| ||investments| |MARKET VALUE|| |At I January 2021|570,319| |Additions|121,814| |Disposals|(199,754)| |Revaluations|52,835| |At 31 December 2021|545,214| |NET BOOKVALUE|| |At 31 December 2021|545,214| |At 31 December 2020|570,319| |||2021|2020| |---|---|---|---| ||Brewin Dolphin capital account|361,509|390,275| |14.|DEBTORS:AMOUNTS FALLING DUE WIIHIN ONE YEAR||| |||2021|2020| ||Other debtors|15,133|82,171| ||Prepayments|75,607|| |||90,740|82,171| ## ## ## |each grant. Further
detail in respect of|each gra|nt is given in note 5|.||| |---|---|---|---|---|---| |||At 1.1.21|SOFA|Paid|At31.12.21| |~ University ofBirmingham||3,499|(3,499)||| |~ Institute ofPsychiatry,
Kings College|||||| |London - Designing
aProtocol to Measure|||||| |the Development
Trajectory ofInfants|with||||| |Tuberous Sclerosis
*Institute ofMedical Genetics, Cardiff
*Centre for Integrative
Physiology,||24,607
1,371|(24,607)||1,371| |University ofEdinburgh
*Institute ofPsychiatry,
Kings College||335|(335)||| |London||14,153||14,153|| |~ Cardiff University||618|||618| |~ Research Department
ofGenetics,|||||| |University
College, London||513|||513| |~ University
ofManchester,
Faculty of|Life||||| |Sciences||15,698||15,472|226| |~ Erasmus MC, Department ofClinical|||||| |Genetics||180|||180| |~ University
College London - The TSCI|||||| |and TSC2 Variation Databases
*Whitehead
Institute - Towards specific||8,881||8,653|228| |Motor Inhibitors
capable ofrescuing|||||| |Tuberous Sclerosis Complex|||||| |loss-of-function||24,336||24,151|185| |~ Cardiff University
-Targeting the|||||| |RefllSTAT3 axis to treat Tuberous|||||| |Sclerosis Complex||37,424||22,493|14,931| |~ Cardiff University
- Characterising
the|||||| |roles ofexosomes in Tuberous
Sclerosis|||||| |Complex||41,351||31,321|10,030| |~ University ofBristol NHS Foundation|||||| |Trust - Randomised
Controlled
Trial of|||||| |Acceptance
and Commitment
Therapy|in||||| |Tuberous
Sclerosis Complex||62,000|30,000|28,905|63,095| ## ## ## ## |CREDlTORS: AMOUN|TS FALLI|TS FALLI|TS FALLI|NG DUE WII|HIN ONE YEA|R - continued||| |---|---|---|---|---|---|---|---|---| |*Institute ofPsychiatry|Psychology|||and||||| |Neuroscience - Neurocognitive||predictors of||||||| |neurodevelopmental
impairment|||in|infants||||| |and toddlers
with TSC
*Cardiff University
- An innovative||||model|11,549||9,032|2,517| |system to cell invasion|in TSC/LAM to|||||||| |uncover new drug targets and therapies|||||47,000||25,565|21,435| |~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| ||||||293,515|27,848|179,745|141,618| |MOVEMENT INFUNDS||||||||| ||||||||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| |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|||||428,495|(440,212)||(11,717)| |Designated
Endowment|Fund||||14,959|(36,155)|52,835|31,639| ||||||443,454|(476,367)|52,835|19,922| |TOTAL FUNDS|||||443,454|(476,367)|52,835|19,922| ## ## ||||||Net|| |---|---|---|---|---|---|---| ||||||movement|At| |||||At 1.1.20|in funds|31.12.20| |Unrestricted||funds||||| |General|fund|||190,000|(69,314)|120,686| |Designated||Endowment|Fund|1,023,996|(172,513)|851,483| |||||1,213,996|(241,827)|972,169| |Restricted funds||||||| |Research||||4,700|(4,700)|| |TOTAL|FUNDS|||1,218,696|(246,527)|972,169| |||||Incoming|Resources|Gains and|Movement| |---|---|---|---|---|---|---|---| |||||resources|expended|losses|in funds| |Unrestricted||funds|||||| |General|fund|||358,580|(427,894)||(69,314)| |Designated||Endowment|Fund|34,166|(155,720)|(50,959)|(172,513)| |||||392,746|(583,614)|(50,959)|(241,827)| |Restricted funds|||||||| |Research||||22,000|(26,700)||(4,700)| |Scotland||||4,000|(4,000)||| |||||26,000|(30,700)||(4,700)| |TOTAL|FUNDS|||418,746|(614,314)|(50,959)|(246,527)| ## ## ||||THE|TUBEROUS SCLEROSISASSOCIATION||| |---|---|---|---|---|---|---| |||||Detailed Statement ofFinancial Activities||| |||||forthe year ended 31December 2021||| ||||||2021|2020| |INCOME AND ENDOWMENTS||||||| |Donations and legacies||||||| |Donations
and subscription|||||269,709|327,058| |Grants|||||74,527|3,000| ||||||344,236|330,058| |Other trading|activities|||||| |Christmas
cards &,other sales|||||6,290|2,884| |Investment
income||||||| |Deposit account interest||||||141| |Income from|managed|portfolio|||14,959|34,167| ||||||14,959|34,308| |Charitable
activities||||||| |Conference|||||77,969|| |Other income||||||| |Government|grants - CJRS|||||51,496| |Total incoming resources|||||443,454|418,746| |Raising donations
and legacies||||||| |Wages|||||75,855|68,133| |Social security|||||5,078|4,521| |Pensions|||||5,309|2,769| |Events fees|||||1,368|280| |Sundries|||||3,727|2,391| |Travel &Communications|||||1,803|1,884| |Bid writing|||||2,400|2,800| |Stafftraining|||||676|| |Marketing &Media|||||1,783|2,622| |Insurance|||||1,327|1,33?| |Office costs|||||7,828|4,452| |Professional|fees||||591|687| |Accountancy|&legal fees||||4,812|5,317| |AGM, Big Day and Annual|||Report costs||2,719|2,770| |Subscriptions|||||300|| |Fixtures and|fittings|||||88| ||||||115,576|100,051| ## |||Detailed Statement ofFinancial Activities||| |---|---|---|---|---| |||for the year ended 31December 2021||| ||||2021|2020| |Raising donations
and|legacies|||| |Other trading activities||||| |Christmas
card sales|||3,123|2,380| |Investment
management|costs|||| |Portfolio management|charges||8,307|8,496| |Charitable
activities||||| |Wages|||170,500|230,617| |Social security|||11,829|22,407| |Pensions|||11,744|13,974| |Sundries||||I| |Stafftraining|||1,710|3,714| |Accommodation
and room hire||||4,532| |Publications
Travel k Communications|||178
234|7,409
4,750| |Benevolent
grants|||3,379|3,070| |Family days and weekends||||314| |Subscriptions|||2,494|2,041| |Postage and Stationery|||594|2,751| |Sundries|||2,158|5,054| |Insurance|||1,680|758| |ITand GDPR services|||13,853|540| |Marketing k.Media|||978|2,610| |Professional
fees||||1,016| |Conference|||52,467|| |Scan|||9,236|| |Grants to institutions|||27,848|147,224| ||||310,882|452,782| |Support costs||||| |Management||||| |Chief executive expenses||||154| |Recruitment
costs|||675|50| ||||675|204| |Finance||||| |Postage and stationery|||1,157|358| |Bank charges||||716| |Fixtures and fittings||||763| ||||1,157|1,837| |Other||||| |ITk, GDPR Services|||11,047|15,113| |Carried forward|||11,047|15,113| ## ||||TH|E TUBEROUS SCLEROSISASSOCIATION||| |---|---|---|---|---|---|---| |||||Detailed Statement ofFinancial Activities||| |||||for the year ended 31December 2021||| ||||||2021|2020| |Other||||||| |Brought forward|||||11,047|15,113| |Insurance|||||2,654|2,674| |Office costs|||||5,042|10,386| |Sundries|||||734|723| |Professional||fees|||1,281|3,441| |Travel|||||827|127| |Loss on sale||oftangible|fixed assets|||(75)| ||||||21,585|32,389| |Governance|costs|||||| |Accountancy||and legal|fees||9,623|10,634| |Annual
report|||||5,439|5,541| ||||||15,062|16,175| |Total resources||expended|||476,367|614,314| |Net expenditure|||||(32,913)|(195,568)|