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Tuberous

Sclerosis Association

3 TSA Update TSCure 26 In your region
The launch of a new 19 Research round up Useful information
What’s strategy, a small but Did you know the TSA specifically for our TSC
important ask and was doing all this? communities in England,
inside messages from our Chair Northern Ireland, Social Dear SCAN Readers
Martin and CEO Maxine
Scotland and Wales
20 Life-changing
TSCare 30 Get involved A warm welcome to you all to this
Issue 16 research @UKTSA
6 The big sleep Kacper Rogala from the Volunteering, Summer 2018 edition of Scan. I hope you
Summer 2018 Fundraising and
Sleep is vital but many of Whitehead Institute in facebook.com/tsauk like the new, simpler, fresher look. I also
us don’t get enough, so Boston talks about his Campaigning for the TSA hope you find the content useful and
we look at how you can research on mTOR 34 Remembering our W www.tuberous-sclerosis.org above all interesting! A huge thank you to
improve it, as well as the inhibitors and how this supporters everyone who has contributed to this edition,
specific challenges for could improve the lives We make a big shout out youtube.com/tsauk whether you’ve taken part in our poll on sleep, been
people living with TSC of people with TSC to our super fundraisers instagram.com/tsauk interviewed, photographed, written something, or just

12 Summertime fun TSCommunity and give thanks for the
lives of absent friends contacted me with feedback. It is all, as they say, grist
If you’re affected by TSC, 22 Outlook Event to the mill!
summer can be a round up Useful contacts
challenge. Here we offer And now for a very simple message which has
We take a look at our Head office
some helpful advice so
most successful Outlook CAN Mezzanine, 32-36 Loman Street, nothing to do with SCAN.
you can enjoy it – from
event ever! Southwark, London SE1 0EH
tips on booking holidays T: 020 7922 7731 If you support the TSA and the work we do and want
and days out to 24 TSA events E: admin@tuberous-sclerosis.org to stay in touch, then please go to our website
accessible transport and Find out exactly why you www.tuberous-sclerosis.org/register give us your
loos 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
TSCampaign T: 07870 210308
Big Day in Sheffield this happy for us to communicate with you by email.
18 Everolimus latest November. E: sarah.roberts@tuberous-sclerosis.org
Read all about the Donations, Fundraising and Events And could we ask you to please encourage as many of
Scottish Medicines Kathryn Harrison and Tanya Darnton your family, friends, colleagues and neighbours to do
Council decision on T: 07922 838960 and 07923 412234 the same – anyone, in fact, who has an interest in TSC
everolimus for TSC- E: fundraising@tuberous-sclerosis.org and would like to stay informed or help us with our
related refractory work in any way.
epilepsy. And, ever
wondered what a CPAG tuberous-sclerosis.org The new data protection laws now in force mean that
is? If so, you can find out if you don’t tick the consent box, we won’t be able to
Opinions expressed in articles do
more here. 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
0 Summer 2018 Street, Southwark, London. SE1 0EH TSA SCAN 3