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2021-12-31-accounts

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)