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2020-12-31-accounts

Page
Report ofthe Trustees 1 to 16
Independent
Examiner's Report		 17
Statement ofFinancial Activities 18
Balance Sheet 19 to 20
Notes to the Financial Statements 21 to 29
Detailed Statement ofFinancial Activities 30 to 32

OBJECTIVES AND AC~S AC~S
Dr Martin Baron University of Exploiting Notch regulation topmbe alternative
mechanisms
Manchester ofTSCsignalling
The research team is using the fruit fiy model to uncover new
mechanisms
ofaction ofTSCgenes in the cell, which
involve the control ofthe transport ofkey regulatory
signafling
components
such, as the Notch receptor,
around
the cell to different locations where they are turned offor
activated.
By defining
the components
and links involved		 in
this new pathway,
they hope to identify candidates
that will
offer new targets to develop
as TSCtherapies
that would
Dr Mark Nellist Erasmus MC augment Tor inhibitor
strategies.
Functional
and structure c~sation ofthe TSC
complex; improved
function assessment ofTSCI and TSC2
variants associated with tubemus
sclerosis complex
The aim ofthis project is to assess the effects ofTSC1 and
TSC2 variants
on TSCprotein complex function
using new,
more sensitive
assays. Comparing
the biochemical
effects of
specific changes
in TSC1 and TSC2 could help explain why
some individuals
have more or less severe TSC disease.
Dr Rosemary University The TSCI and TSC2variation databases
Ekong and Dr College London The two databases
(www.LOVD.ul/TSC I and
Mark Thomas www. LOVD.nVTSC2)
list as far as possible all known
changes in the TSC1 and TSC2
genes, together
with
evidence for which ofthem can cause Tuberous
sclerosis
Complex (TSC).
Dr Kacper Whitehead Identifying
and creating more specific medicines forTSC
Rogala Institute -MIT This project focuses on research into the structural
biology of
TSC 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
unwanted
long-term
side-effects
Dr Elaine Dunlop Cardiff Characterising
the role ofexosomes in TSC
University We know that TSCcysts 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
understand
exactly how TSCcysts communicate
with
healthy cells.
It is hoped that this research could help to
reveal new ways ofpreventing
TSC cysts from growing,
thereby helping to develop better strategies
for treating
and
managing
TSC.
Professor Cardiff Understanding
the limits ofevemlimus
and rapamycin
Andrew Tee University This project is investigating
the limits ofeverolimus
and
Hospital rapamycin,
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 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 TSCpatients.
Report ofthe Trustees
forthe year ended 31December 2020
OBJECTIVESAND AC~S
Dr Elaine Dunlop Cardiff A model ofcell invasion inTSC-LAM US Ministry
University One ofthe current priorities
in TSCresearch is to develop		 a ofDefence
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 offemales who live with TSC.LAM is caused by
TSC cells moving fi'om different parts ofthe body to the
lungs, causing cysts.
This new project aims to create a
LAM model. Ifthe research is successful, it will give
scientists a better understanding
ofwhy TSC LAM happens
and why some cells invade the lungs whilst others do not.
Dr Sam Amin University of Better undershnding
the accessibility ofmental health		 Anonymous
and Dr Ingram Bristol services for children and young people with TSC major donor
Wright This project aims to develop
an understanding
ofappropriate
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 ofproviding
therapies to children
and young
people with TSC who are experiencing
psychological
or
emotional
distress.
Professor Petrus University of The TANDem Pmject King
de Vries and Cape Town and The TANDem Project brings together a worldwide
team		 of Baudouin
Professor Anna UZ Brussels families affected by TSC,researchers
and clinicians to		 Foundation
Janssen provide scientific evidence for greater intervention
and
treatment ofTSC Associated Neuropsychiatric
Disorders
(such as anxiety,
depression
and aggressive
behaviour).		 The
two-part project will first focus on the development
ofa
self-report
TAND checldist 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 of
TAND researchers
to raise awareness
and lead future
research into TAND.

for the year end ed 31December 2020
2020 2019
Unrestricted Restricted Total Total
funds funds funds funds
Notes 8
INCOME AND ENDOWMENTS FROM
Donations
and legacies		 304,058 26,000 330,058 234,374
Charitable
activities
Family Care k Support 1,510
Other trading
activities		 2,884 2,884 1,756
Investment
income		 34,308 34,308 65,176
Other income 51,496 51,496
Total 392,746 26,000 418,746 302,816
BXPENDITURE ON
Raising funds 4 110,927 110,927 157,232
Charitable
activities
Family Care k. Support 246,864 246,864 457,658
Research 225,823 30,700 256,523 385,571
Total 583,614 30,700 614,314 1,000,461
Net gains/(losses)
on		 investments (50,959) (50,959) 208,190
NET INCOME/(EXPENDITURE) (241,827) (4,700) (246,527) (489,455)
RECONCILIATION OFFUNDS
Total ftmds brought forward 1,213,996 4,700 1,218,696 1,708,151
TOTAL FUNDS CARRIED FORWARD 972,169 972,169 1,218,696

Balance Sheet
31 December 2020
2020 2019
Unrestricted Restricted Total Total
funds funds funds funds
Notes
FlXEDASSETS
Tangible
assets		 12 851
Investments 13 960,594 960,594 1,268,946
960,594 960,594 1,269,797
CURRENT ASSETS
Debtors 14 82,171 82,171 98,608
Cash at bank 251,432 251,432 264,938
333,603 333,603 363,546
CREDITORS
Amounts
falling due within one year		 15 (322,028) (322,028) (414,647)
NET CURRENT ASSETS 11,575 11,575 (51,101)
TOTAL ASSETSLESSCURRENT
LIABILITIES 972,169 972,169 1,218,696
NET ASSETS 972,169 972,169 1,218,696
FUNDS 16
Unrestricted
funds		 972,169 1,213,996
Restricted funds 4,700
TOTAL FUNDS 972,169 1,218,696

OTHER TRADING ACTIVITIES
2020 2019
Christmas
cards &other sales		 2,884 1,756
INVESTMENT INCOME
2020 2019
Deposit account interest 141 201
Income fiom managed
portfolio		 34,167 64,975
34,308 65,176

INVESTMENT MANAGEMENT
COSTS
2020 2019
Portfolio management
charges		 8,496 11,795
GRANTS PAYABLE
2020 2019
Family Care gr Support (13,053)
Research 147,224 265,618
147,224 252,565
The total grants paid to institutions
during the year was		 as follows:
2020 2019
E
Addenbrookes
Hospital -TSCPsychology
Brighton TSRegistry
*Whitehead
Institute - Towards Specific Mtor Inhibitors		 Capable of (13,053)
(101)
Rescuing Tuberous
Sclerosis Complex Loss-of-function
*Cardiff University
—Targeting the Refl/STAT3
axis to		 treat Tuberous 51,000 51,000
Sclerosis Complex
*Cardiff University
—Characterising
the Role ofExosomes in Tuberous		 32,719 61,744
Sclerosis
*Cardiff University
—An innovative
model system ofcell invasion
in		 32,712 32,537
TSC/LAM to uncover new drug targets and therapies
*Institute ofPsychiatry
Psychology
and Neuroscience		 - Neurocognitive 30,793
predictors ofneurodevelopmental
impairment
in infants		 and toddlers with
TSC
*University ofCape Town -Empowering
Families through
Technology:		 a 16,740
mobile-health
project to reduce the TAND identification
and treatment
"University ofBristol NHS Foundation
Trust - Randomised
Controlled		 gap
Trial		 41,697
ofAcceptance
and Commitment
Therapy
in the Tuberous		 Sclerosis Complex 62,000
147,224 252,564

SUPPORT COSTS
Governance
Management Finance Other costs Totals
Family Care &Support 127 1,004 22,796 8,088 32,015
Research 77 833 9,593 8,087 18,590
204 1,837 32,389 16,175 50,605

STAFP COSTS
2020 2019
Wages and salaries 298,750 397,223
Social security costs 26,928 35,294
Other pension costs 16,743 21,705
342,421 454,222
The average monthly number ofemployees during the year was as follows:
2020 2019
Fundraising 2 3
Family Support and Communications 8 10
Research 3 3
13 16

No employees
received emoluments
in excess of$60,000.		 No employees
received emoluments
in excess of$60,000.
10. COMPARATIVES FORTHESTA~ OFFINANCIALA~S
Unrestricted Restricted Total
funds funds fundsf
INCOME AND ENDOWMENTS FROM
Donations
and legacies		 229,674 4,700 234,374
Charitable
activiftes
Family Care &Support 1,510 1,510
Other trading activities 1,756 1,756
Investment
income		 65,176 65,176
Total 298,116 4,700 302,816
EXPENDITURE ON
Raising funds 157,232 157,232
Charitable
activities
Family Care &Support 452,237 5,421 457,658
Research 385,571 385,571
Total 995,040 5,421 1,000,461
Net gains on investments 208,190 208,190
NET INCOME/(EXPENDITURE) (488,734) (721) (489,455)
RECONCILIATION
OFFUNDS
Total funds brought forward 1,702,730 5,421 1,708,151
TOTAL FUNDS CARRIED FORWARD 1,213,996 4,700 1,218,696
11. INTANGIBLE FIXEDASSETS
Database
costs
COST
At 1 January 2020 and 31 December 2020 19,624
AMORTISATION
At 1 January 2020 and 31December 2020 19,624
NET BOOKVALUE
At 31December 2020
At 31December 2019

12. TANGIBLE FIXED A SS ETS
Fixtures
and
fittings
COST
At
1 January 2020 and		 31 December 2020 1,135
DEPRECIATION
At 1 January 2020 284
Charge for year 851
At 31December 2020 1,135
NET BOOKVALUE
At 31December 2020
At 31December 2019 851
13. FIXEDASSETINVESTMENTS
2020 2019
Shares 570,319 1,259,896
Brewin Dolphin capital account 390,275 9,050
960,594 1,268,946
Additional
information		 as follows:
Listed
~TVALUE investments
At 1 January 2020 1,259,896
Additions 36,726
Disposals (675,344)
Revaluations (50,959)
At 31December 2020 570,319
NET BOOKVALUE
At 31December 2020 570,319
At 31December 2019 1,259,896
There were no investment assets outside the UK.
Investments
(neither listed		 nor unlisted) were as follows:
2020 2019
Brewin Dolphin capital account 390,275 9,050

DEBTORS:AMOUNTS FALLING DUE WITHIN ONE YEAR
2020 2019
f
Other debtors 82,171 98,608
CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2020 2019
Trade creditors 13,354 36,410
Social security and other taxes 5,413 8,892
Other creditors 296,858 358,888
Accrued expenses 6,403 10,457
322,028 414,647
year in respect ofeach grant. Further de tail in respect ofeach gra nt is given in note 5.
At 1.1.20 SOFA Paid At 31.12.20
*University ofBirmingham 3,499 3,499
s Institute ofPsychiatry,
Kings College
London - Designing
aProtocol to Measure
the Development
Trajectory ofInfants
with Tuberous Sclerosis
Institute ofMedtcal Genetics, Cardiff
Centre for Integrative
Physiology,		 24,607
1,371		 24,607
1,371
University ofEdinburgh
*Institute ofPsychiatry,
Kings College		 335 335
London
Cardiff University
Research Department
ofGenetics,		 14,153
618		 14,153
618
University
College, London
*University ofManchester,
Faculty of		 513 513
Life Sciences
*Erasmus MC, Department ofClinical		 24,679 (8,981) 15,698
Genetics
*University
College London - The TSC1		 180 180
and TSC2 Variation Databases
*Whitehead
Institute - Towards specrBc		 29,945 (21,064)
Motor Inhibitors
capable ofrescuing
Tuberous
Sclerosis Complex
loss-of-function
*Cardiff University
- Targeting
the		 35,321 51,000 (61,985) 24,336
Refl/STAT3
axis to treat Tuberous
Sclerosis Complex
*Cardiff University
- Characterising
the		 36,659 32,719 (31,954) 37,424
roles ofexosomes
in Tuberous Sclerosis
Complex
*University
ofBristol NHS Foundation		 36,273 32,712 (27,634) 41,351
Trust - Randomised
Controlled Trial of
Acceptance
and Commitment
Therapy		 in
Tuberous Sclerosis Complex 62,000 62,000

CREDITORS: AMOUNTS FALLING DUE W 1THW ONE YEA R - continued
*Institute ofPsychiatry
Psychology
and
Neuroscience
- Neurocognitive
predictors
ofneurodevelopmental
impairment
in
infants and toddlers
with TSC
"University ofCape Town -Empowering		 16,740 (5,191) 11,549
Families through
technology:
a
mobilehealth
project to reduce the TAND
identification
and treatment
gap
*Cardiff University
-An innovative
model		 41,697 (41,697)
system to cell invasion
in TSC/LAM to
uncover new drug targets and therapies 28,353 30,793 (12,146) 47,000
356,942 147,224 (210,652) 293,515

Net
movement At
At 1.1.20 in funds 31.12.20
Umestricted 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 fimds
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)

Net Transfers
movement between At
At 1.1.19 in funds funds 31.12.19
Unrestricted funds
General fund (496,057) 686,057 190,000
Designated Endowment Fund 1,473,818 236,235 (686,057) 1,023,996
Kilmain Family Research Fellowship 228,912 (228,912)
1,702,730 (488,734) 1,213,996
Restricted funds
Research 4,700 4,700
Education 5,421 (5,421)
5,421 (721) 4,700
TOTAL FUNDS 1,708,151 (489,455) 1,218,696
Incoming Resources Gains and Movement
resources
f		 expended losses in funds
Unrestricted funds
General fund 233,141 (729,198) (496,057)
Designated Endowment Fund 64,975 (36,930) 208,190 236,235
Kilmain Family Research Fellowship (228,912) (228,912)
298,116 (995,040) 208,190 (488,734)
Restricted funds
Research 4,700 4,700
Education (5,421) (5,421)
4,700 (5,421) (721)
TOTAL FUNDS 302,816 (1,000,461) 208,190 (489,455)

forthe year ended 31Dec ember 2020
2020 2019
INCOME AND ENDOWMENTS
Donations
and legacies
Donations
and subscription		 327,058 230,180
Grants 3,000 4,194
330,058 234,374
Other tnubng activities
Christmas
cards &other		 sales 2,884 1,756
Investment
income
Deposit account interest 141 201
income from managed portfolio 34,167 64,975
34,308 65,176
Charitable
activities
Family days and weekends 1,510
Other income
Government
grants - CJRS		 51,496
Total incoming resources 418,746 302,816
Raising donations
and		 legacies
Wages 68,133 82,081
Social security 4,521 7,310
Pensions 2,769 4,611
Events fees 280 11,823
Sundries 2,391 26,514
Travel &Communications 1,884 7,458
Bid writing 2,800
Stafftraining 3,325
Marketing &Media 2,622
Insurance 1,337
Office costs 4,452
Professional
fees		 687
Accountancy
&legal fees		 5,317
AGM, BigDay and Anmial Report costs 2,770
Fixtures
and fittings		 88
100,051 143,122
Other tradhrg activities
Christmas
card sales		 2,380 2,315
Investment
management		 costs
Portfolio management charges 8,496 11,795

THETUBEROUS SCLEROSISASSOCIATION
Detailed Statement ofFinancial Activities
for the year ended 31December 2020
2020 2019
Charitable
activities
Wages 230,617 271,142
Social security 22,407 22,955
Pensions 13,974 14,454
Sundries 1
Stafftraining 3,714
No description 22,577
Accommodation and room hire 4,532
Publications 7,409 18,704
Travel &Communications 4,750
Benevolent
grants		 3,070 5,700
Family days and weekends 314 1,175
Subscriptions 2,041
Postage and Stationery 2,751
Sundries 5,054 2,237
Insurance 758
IT and GDPR services 540
Marketing
&Media		 2,610
Professional
fees		 1,016
Grants to institutions 147,224 252,565
452,782 611,509
Support costs (see page 24no.6)
Management
Chief executive salary 44,000
Social security 5,029
Pensions 2,640
Chief executive expenses 154 1,375
Recruitment costs 50 1,028
204 54,072
Fmance
Postage and stationery 358 3,386
Bank charges 716 2,173
Amortisation ofintangible fixed assets 333
Depreciation of tangible fixed assets 763 250
1,837 6,142
Other
Trustees' expenses 3,036
IT&GDPR Services 15,113 15,375
Insurance 2,674 3,551
Office costs 10,386 11,564
Sundries 723 4,677
Professional fees 3,441 7,053
Marketing 24,420
Travel 127 608
Carried forward 32,464 70,284
forthe year ended 31 December 2020
2020 2019
Other
Brought forward 32,464 70,284
Loss on sale oftangible fixed assets (75)
Redundancy costs 52,333
32,389 122,617
Governance costs
Auditors'
remuneration		 6,357
Sundries 13,926
Accountancy and legal fees 10,634 10,264
AGM expenditure 5,541 18,342
16,175 48,889
Total resources expended 614,314 1,000,461
Net expenditure ~195,568) (697,645)