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Sleep on it A new focus on

strategy
Apparently, a giraffe needs less than
two hours of sleep a day, a cat spends
two thirds of its life asleep and lucky The TSA Board are currently
developing a re-focused strategy
humans spend a third of their life
which expresses our vision, aims
sleeping. I say lucky humans because there and objectives for the years ahead. Your chance to tell us how
are many who, for various reasons, do not The four core TSC themes will you would like us to keep in
manage to sleep that well. continue to describe the ways in
which our Association aims to make touch with you.
Sleep is vital. It is the time when our brains process the information we have life better for people with TSC and
received unconsciously during the day, and keeping our conscious and those who support them. New GDPR data protection regulations
unconscious worlds aligned is one of sleep’s most important functions.
As many of you will be aware, we have been introduced in May mean you need to give us
Knowing this, I will always want to sleep on significant issues
consulting with members of our community your permission for us to stay in touch with you
and decisions to give the unconscious a chance to surface
as part of our strategy review. We’ve talked to by email and telephone.
before I take any action.
people affected by TSC, their families and
A good night’s rest has so many benefits that this issue carers, and also the professionals who As a valued member of our community, we want to make
of SCAN comes with ideas and suggestions to help us support them, including clinicians and sure you are up to date with all things TSC. Whether you are
sleep more like cats than giraffes. I hope you will find it useful. scientists. We feel satisfied that we have interested in the NHS funding of everolimus, opportunities
listened to all the feedback and now have an to take part in research or running next year’s London
With my best wishes, Martin Short TSA Chairman
updated understanding of what our Marathon, we need your consent to let you know about
community needs from us. them.

The result of these conversations is being You can give this by logging on to our website, if you are
Summer distilled as SCAN goes to press but it is clear already registered. Or if you’re not, just fill out the quick
that you have found our four core themes
and easy form under the register tab at the top of the
survival tips helpful and we are using them to shape this home page. Please take five minutes to do this. We really
issue of SCAN. You will find sections looking
don’t want to lose touch. You are our community and we
at TSCare, TSCampaign, TSCure and need you!
TSCommunity. Please let us know if you like
It’s some years since my sons were at Thank you to all of you who have already done this -
this layout.
school, but I can still recall feeling like a fantastic! We really appreciate your ongoing support.
In parallel with finalising the strategy, we are
deer in the headlights at the thought of
also looking at how we can fund and deliver
the school summer holidays. Ok, the first our new agreed priorities. After a number of
few days are fun, never quite making it out years of running deficit budgets, we now The TSA is
of pyjamas, but then reality kicks in. When need to balance the books in a way that
they’ve eaten everything , boredom has set in and secures the long term future of the changing the way
energy levels are rising, you wonder why you haven’t organisation. Are there ways we can be more
efficient through the use of digital
developed a survival strategy. it works
applications, encourage more interaction and
While it’s easy to joke, summer holidays can be a significant challenge, particularly if you have a family member attract new audiences? Are there ways we
living with TSC. As many of you know, numerous adult services are reduced during the summer, routine activities can partner with other organisations to It wants to make
are disrupted and finances are challenged as we try to fill our days. deliver more? And how can we develop a
fundraising strategy that ensures everything
But help is at hand with this edition of SCAN. We hope it will provide you with the information you need to enjoy we do is sustainable? life better for
getting out and about. We have tips on places to visit, accessible transport, toilets and changing facilities, as well
as holiday planning and how to make your money go that little bit further. And please remember, our TSA We hope that in November at the BIG DAY people with TSC
(see page 21), we will be able to provide you
Regional Advisers are at the other end of the phone if you need any help.
with far more detail about our plans for the
Wishing you a great summer, Maxine Smeaton next five years. For now, thank you for all that
you do to support our efforts to grow and
develop the TSA.
4 Summer 2018 TSA SCAN 5