##
|||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)|