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Tuberous
Sclerosis Association
3 TSA Update TSCure
The launch of a new 19 Research round up
What’s strategy, a small but
important ask and
inside messages from our Chair
Martin and CEO Maxine
20 Life-changing
TSCare
Issue 16
6 The big sleep
Summer 2018
Sleep is vital but many of
us don’t get enough, so
we look at how you can
improve it, as well as the
specific challenges for
people living with TSC
12 Summertime fun TSCommunity
If you’re affected by TSC, 22 Outlook Event
summer can be a
challenge. Here we offer
some helpful advice so
you can enjoy it – from
tips on booking holidays
and days out to 24 TSA events
accessible transport and
loos
TSCampaign
18 Everolimus latest
Read all about the
Scottish Medicines
Council decision on
everolimus for TSC-
related refractory
epilepsy. And, ever
wondered what a CPAG
is? If so, you can find out
more here.
0 Summer 2018
26 In your region
Useful information
Did you know the TSA specifically for our TSC
was doing all this? communities in England,
Northern Ireland, Social Dear SCAN Readers
Scotland and Wales
30 Get involved A warm welcome to you all to this
research @UKTSA
Kacper Rogala from the Volunteering, Summer 2018 edition of Scan. I hope you
Fundraising and
Whitehead Institute in facebook.com/tsauk like the new, simpler, fresher look. I also
Boston talks about his Campaigning for the TSA hope you find the content useful and
research on mTOR 34 Remembering our W www.tuberous-sclerosis.org above all interesting! A huge thank you to
inhibitors and how this supporters everyone who has contributed to this edition,
could improve the lives We make a big shout out youtube.com/tsauk whether you’ve taken part in our poll on sleep, been
of people with TSC to our super fundraisers instagram.com/tsauk interviewed, photographed, written something, or just
and give thanks for the
lives of absent friends contacted me with feedback. It is all, as they say, grist
to the mill!
round up Useful contacts
And now for a very simple message which has
We take a look at our Head office
most successful Outlook CAN Mezzanine, 32-36 Loman Street, nothing to do with SCAN.
event ever! Southwark, London SE1 0EH
T: 020 7922 7731 If you support the TSA and the work we do and want
E: admin@tuberous-sclerosis.org to stay in touch, then please go to our website
Find out exactly why you www.tuberous-sclerosis.org/register give us your
should book your place SCAN Editor and TSA Communications
now to come to our TSA Sarah Roberts details and tick the consent box to say that you are
T: 07870 210308
Big Day in Sheffield this happy for us to communicate with you by email.
November. E: sarah.roberts@tuberous-sclerosis.org
Donations, Fundraising and Events And could we ask you to please encourage as many of
Kathryn Harrison and Tanya Darnton your family, friends, colleagues and neighbours to do
T: 07922 838960 and 07923 412234 the same – anyone, in fact, who has an interest in TSC
E: fundraising@tuberous-sclerosis.org and would like to stay informed or help us with our
work in any way.
tuberous-sclerosis.org The new data protection laws now in force mean that
if you don’t tick the consent box, we won’t be able to
Opinions expressed in articles do
not necessarily express the official email you our newsletters any more, however many
policy of the Tuberous Sclerosis years we might have been doing so! We really don’t
Association.
want to have to say goodbye!
Information correct at time of
going to press. So thanks for reading – please get registering and
“to provide help for ticking (there’s more about this on page 5 too) – and
Tuberous Sclerosis Association is a Company
Limited by Guarantee Registered in England and today and a cure above all, have a good summer.
Wales No. 2900107.
English Registered Charity Number. 1039549
Scottish Registered Charity No. SC042780 for tomorrow” Sarah Roberts Editor
Registered Office: CAN Mezzanine, 32-36 Loman
Street, Southwark, London. SE1 0EH TSA SCAN 3