TSA Big Day 2018

Tuberous Sclerosis Association

TSA Big Day 2018!
NB - Bookings will close at 17.00 on Monday 5th November.
Creche booking have now closed
Our annual BIG DAY event will be held on 10 November at Sheffield Hallam University. It will have a full agenda of presentations and workshops and opportunities to meet with the TS community. And this time round, inspired by the TS Alliance’s world conference, the event will be divided into two tracks – Children and Young People, and Adults – to make it easier for you to navigate. 
For 2018, the keynote presentation will be on Epilepsy, given by Consultant Paediatric Neurologist Dr Sam Amin, and experts from charity partners will run workshops on sleep and challenging behaviours. The day will also include the TSA AGM, an update on the TSA’s work from our Chair and Chief Executive and a round up on the research TSA is driving from TSA’s Head of Research Strategy Dr Chris Kingswood.
 Once again, you will have the opportunity to book one-to-one sessions with clinicians and researchers. Booking information for one-to-one sessions will be released on Monday 22 October. For full details -<A HREF="http://www.tuberous-sclerosis.org/new-tsa-news/one-to-one-sessions-with-clinicians-at-the-tsa-big-day-information-and-how-to-book" TARGET="_parent" DATA-MSYS-CLICKTRACK="0" REL="nofollow noopener noreferrer"> click HERE.</A>
TSA Big Day Agenda
08:45 – 10:00 Registration 
09:15 – 09:45 TSA’s Annual General Meeting (AGM)
09:45 – 10:00 Short break 
10:00 – 10:10 Welcome to the Big Day 
10:10 – 10:30 Introducing the TSA’s new 5-year strategy 
10:30 – 11:00 Epilepsy keynote speech 
11:00 – 11:15 Community speakers discussing ‘What I wish I’d known when we first got the diagnosis of TSC’.
11:15 – 11:45 Tea and coffee break 
11:50 – 12:50 Morning workshops - select one of :
o   For children (0-12) – ‘Sleep Issues and Practical Strategies’
o   For adults – ‘Sleep: The Essentials’
o   Research Spotlight Sessions:
-  ‘Behaviours in young children with tuberous sclerosis complex’ 
-  ‘Early development in Tuberous Sclerosis: Initial findings from the EDiTS study’
-  ‘We’ve made the best of it, but we don’t have a normal life: Families’ experiences of TSC and Seizure Management’
1:00 – 2:30    Lunchtime 
1:00 – 2:30    Marketplace open 
1:30 - 3:30    One-to-One Sessions with Clinicians (15 minutes per individual session)
2:30 – 3:30    Afternoon Workshops - select one of :
o   For children (0-12) – ‘Challenging behaviours in children with TSC’
o   For adults – ‘Breathing Space’
o   Research Spotlight Sessions:
-  ‘Research highlights: a new tumour suppressor function of TSC2 and finding a therapy’ 
-  ‘Investigating the biology of TS cells to design new therapies’ 
-  ‘Using the fruit fly to understand mechanisms of the TSC pathway’
3:30 – 4:00    Research and Clinical Update 
4:00 – 4:25    Improving NHS Care: UK Clinical Guidelines for TSC and Everolimus for Epilepsy.
4:25 – 4:30    Thank you for coming and wishing you a safe journey home
NB : Please note schedule is subject to change due to circumstances beyond our control. 
Information about how to book creche places - <A HREF="http://www.tuberous-sclerosis.org/new-tsa-news/childcare-information-update-for-tsabigday-2018" TARGET="_blank" DATA-MSYS-CLICKTRACK="0" REL="nofollow noopener noreferrer">http://www.tuberous-sclerosis.org/new-tsa-news/childcare-information-update-for-tsabigday-2018</A>
If you plan to bring a baby who is under the age of 1 years old, please use the code BD18BABY when purchasing a child's ticket. We will also need to know whether or not you'll be bringing a pram or buggy to the event, so please include this information during registration or email Bethan at bethan.vaughan@tuberous-sclerosis.org. 
Information about photo permissions
By ticking 'Yes' on the registration form, you are consenting to giving the Tuberous Sclerosis Association permission to reproduce and ­­publish in print, online and on TSA social media channels without charge, your name and photographs and/ or video footage supplied by yourself or any taken at TSA events until further notice. You confirm that you are aged 18 or over and will, if required, provide your specific consent for said use of images of named child / children within your care.You consent to your basic records being kept on the TSA’s secure database under the provisions of the Data Protection Act 1998, and, General Data Protection Regulation 2018. You consent also to receiving marketing emails from the TSA.
The TSA will not disclose your details to any other organisation. Please see <A HREF="http://www.tuberous-sclerosis.org/privacy-policy.html" TARGET="_blank" DATA-MSYS-CLICKTRACK="0" REL="nofollow noopener noreferrer">http://www.tuberous-sclerosis.org/privacy-policy.html</A> for full details of how we look after and use the information you give us, and how you can access the information we hold on you at any time. For further information, please contact the organiser. 
FAQs
What are my transport/parking options for getting to and from the event?
The TSA's Big Day will be held at: Sheffield Hallam University, City Campus, Howard Street, Sheffield, S1 1WB (if you're using a satnav please use S1 4RF). 
There is a multi-storey car park within a 5 minute walk of the city campus: APCOA: Eyre Street, S1 4QW. 
Parking chips from APCOA need to be scanned at reception in order to claim the discount. PLEASE NOTE: you must take your parking chips to be scanned at reception no later than 2PM on the day. If your chip is not scanned, the discount will not be applied and you will pay the full price for parking.  More information on APCOA parking can be found at: <A HREF="https://www.apcoa.co.uk/parking/sheffield/the-moor/" TARGET="_blank" DATA-MSYS-CLICKTRACK="0" REL="nofollow noopener noreferrer">https://www.apcoa.co.uk/parking/sheffield/the-moor/</A>
If you're a blue badge holder, you can arrange parking at either campus by contacting Bethan at bethan.vaughan@tuberous-sclerosis.org. 
Sheffield train station is a 5 minute walk to the university. Visit <A HREF="http://www.nationalrail.co.uk/" TARGET="_blank" DATA-MSYS-CLICKTRACK="0" REL="nofollow noopener noreferrer">http://www.nationalrail.co.uk/</A> for travel times and fares. 
How can I contact the organiser with any questions?
For any queries, please contact Bethan at bethan.vaughan@tuberous-sclerosis.org.  
What's the refund policy?
30 days. 
How do I book crèche for my child?
Creche bookings closed on the 1st November, Children are welcome to attend all sessions at the Big Day. 
Who do I inform about any special dietary requirements?  
Please detail any special dietary requirements when prompted on the registration form.

Sheffield Hallam University

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TSA Big Day 2018

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