Welcome to your NI TSA Autumn 2016 e-newsletter !

Welcome to our Northern Ireland TSA Newsletter. This edition aims to provide information specific to the TSC community in Northern Ireland, and will be published twice a year, in the Spring and Autumn. We hope you like it and find it useful..

Keep in touch via Twitter and Facebook

Did you know you can also keep in touch with us via our social media channels? We post daily updates on Twitter @uktsa and Facebook.com/thetsauk as well as sharing photos, videos and info which the TSC community – local, national and international - shares with us

Next NI regional Group meeting in November
Come and join us at our next Regional group meeting in Belfast.

The next Northern Ireland Regional Group meeting will take place on November 8 in the Larkin Room, Postgraduate Centre, Tower Block, Belfast City Hospital, 51 Lisburn Road, Belfast BT9 7AB from 11am and 1pm. Ailish Gannon, Paediatric Dietitian at The Royal Hospital for Sick Children, Belfast will be the guest speaker at this event. Ailish will give a short presentation on the ketogenic diet in relation to epilepsy in TSC. To find out more and to book your place please contact Tanya Darnton, Volunteer Manager for the TSA, on tanya.darnton@tuberous-sclerosis.org Tel: 02380 730 823 or mobile 07597 180 088.

Changes to Special Education Needs
The Education and Library Boards (ELBs) were dissolved on 31 March 2015. The Education Authority (EA) was established on 01 April 2015 and is now responsible for all of the operational functions previously carried out by the five ELBs in accordance with the Education Orders.

A long term change programme is currently being implemented to manage the transition from five organisations with responsibility for delivery of education services to a single authority. In the short term, in the majority of cases, there should be no change to services, how you access them or the policies that apply to you, your child or your school.

For support and information you may contact;
  1. SENAC (Special Educational Needs Advice Centre) on their Advice Line (028) 9079 5779 or e-mail them on info@senac.co.uk
  2. The Children’s Law Centre (CLC) on their Advice Line (028) 0808 808 5678 or e-mail them on chalky@childrenslawcentre.org
Useful Reading: The Good Practice Guidelines are for schools to meet the Special Educational Needs of pupils at the school based stages (Stages 1-3) of the Code of Practice (and particularly at Stage 3 prior to any consideration of a request for Statutory Assessment). They can be accessed HERE


Benefit changes

Changes to the Welfare System in NI began in May 2016 and benefits are changing for people of working age. More information on each of the changes to the welfare system is available at www.nidirect.gov.uk/welfarechanges. There is also an information helpline if you are unsure about any of the changes described on the website; 0300 2007877. Or you could look at the useful free benefits calculator site run by Turn2Us https://benefits-calculator.turn2us.org.uk/AboutYou


New sleep support hub tackles sleep deprivation for families raising disabled children

Tired Out, Family Fund’s new sleep support service, is live and ready to support parents and carers of disabled children with sleep issues. Tired Out aims to support families by pulling together all information and resource about sleep and putting it in one place. This includes information about UK-wide support available to families in their local area, useful sleep tips and a wide range of research, resources and stories from families themselves. For more information please see https://www.familyfund.org.uk/news/new-sleep-support-hub-tackles-sleep-deprivation-for-families-raising-disabled-children.


Christmas cards on sale now

Support the TSA and buy your Christmas cards from us today.
Our 2016 TSA Christmas cards are now on our website where you can either order them online HERE, or you can view your choices and buy direct from your regional group organiser.
Or you can contact our Fundraising Officer Kathryn Harrison, direct, on kathryn.harrison@tuberous-sclerosis.org or call her on 0161 681 6015.


Fundraising events in Northern Ireland

The Coca-Cola Lisburn Half Marathon, 10K Road Race and Fun Run – June 2017
This is one of Northern Ireland’s largest sporting participation events, catering for all abilities. The annual event attracts approximately 6,000 participants, and offers friends and family the opportunity to run together, in a fun environment, with many participants running to raise much needed funds for a range of worthwhile causes. So why not leap into action, take up the challenge and get your running shoes on by clicking HERE!
Tough Mudder Ireland – 8-9 July 2017 at Loughcrew Adventure Centre Oldcastle, Co. Meath
Get tough and get muddy for TSA in 2017! The Tough Mudder Ireland is returning to Loughcrew where it promises to push anyone who isn't prepared to their limits. Another gut-busting course awaits - thick mud, rolling hills, deep woods and plenty of obstacles. Why not support TSA while testing yourself against his fun filled, mud soaked challenge run?  Click HERE for more details.

or this:
Belfast Run In The Dark – 16th November 2016
The iconic Belfast Run in the Dark will take you through the floodlit Stormont Estate. On Wednesday, the 16th of November at 8pm you can join thousands of runners in Belfast, across Ireland and the UK and right around the world. This is a 5k run with a difference, and one not to be missed. You can raise money for TSA through sponsorship, though any profit from the entry fee goes to support Mark Pollock Trust. Click HERE for more details.
Help us to celebrate our 40th birthday

Next year – 2017 – will be the 40th anniversary of the founding of the TSA. And to help us to celebrate this we are looking to publish 40 stories throughout the year which recognise not only our journey to date but also look to the future, and, hold 40 dedicated 40th birthday fundraising events. We’ll be bringing you more details of all this in SCAN, on our website, on our Facebook page, our Twitter feed and through our monthly newsletter. But in the meantime, if you have any ideas you’d like to share with us, if you’d like to support our 40th anniversary in any way – or feel you’d like to share your TSC story with us – then please get in touch with Comms Officer Sarah Roberts on sarah.roberts@tuberous-sclerosis.org / 07870 210308 or Fundraising Officer Kathryn Harrison on kathryn.harrison@tuberous-sclerosis.org / 0161 681 6015 at any time. We’d love to hear from you.