Welcome to your NI TSA e-newsletter page!

Welcome to our first Northern Ireland TSA Newsletter. This new 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 will like it and find it useful.

For support and information you can turn to Claire

In case you don’t already know this, your TSA Advisor for Northern Ireland is Claire Kirk. Claire works Mondays to Wednesdays and can be contacted on Claire.kirk@tuberous-sclerosis.org, mb 07724 591485.

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.

September 17 - save the date!

Our annual get together / conference will be held on Saturday, September 17, at the Belfry Hotel in Nottingham. The event is called TSA Big Day 2016 and we would love to see as many people as possible attend from the UK TSC community including adults and children with TSC, plus their loved ones and carers, medics and other professionals. TSA Big Day 2016 will offer opportunities to find out more about research that’s going on into the condition, the work of the TSA, progress on campaigns for better drug treatments, and, time to meet old friends and make some new ones. For more details and to book to attend please go HERE.

Thanks to our Support Fund we are also able to offer financial help of grants up to £250 to those people who wish to attend, but may not have the money to do so. More information about this can be found HERE

Tea & Scones 2016!

Last year our Tea & SCones for TSC appeal raised over £4000 and we’d like to thank everyone who took part. This year we’re asking you to don your aprons, pull out those scales and help us to raise even more money! For more details and your Tea & SCones 2016 fundraising pack please click HERE

Rare Disease Day – February 29

Claire Kirk, our TSA Advisor for Northern Ireland, met with a number of other professionals working in the rare disease arena on February 29  - Rare Disease Day - at Belfast City Hospital. Here Claire is pictured with Tara O’Neill (centre, TSC genetic counsellor) and Rachel Keys (right) one of the newly appointed Neurological care advisors for Northern Ireland.  Later that same day Claire represented the TSA at the Northern Ireland Rare Disease Parliamentary reception at Stormont where Simon Hamilton, Health Minister, spoke about the implementation of the NI Rare Disease Plan. 

For more information about the Neuro Care Advice Service and support you may be able to access please email neurocareadvice@belfasttrust.hscni.ne or call 07590 447222.

Neuro Care Advice Service Neuro Care Advice Service (374 KB)

NI Regional Group goes from strength to strength

Hot on the heels of Rare Disease Day our first Northern Ireland Regional Group meeting of 2016 took place at Belfast City Hospital on March 1. Fiona O’Donnell, from SENCO, gave a very well received presentation about special educational needs in relation to the services available in NI. The minutes of this meeting are available on the NI Group area of this website HERE.

Our next NI Regional Group Meeting will be on Tuesday, June 7 at Belfast City Hospital, 11am to 1pm. To book your place please contact Tanya Darnton on tanya.darnton@tuberous-sclerosis.org or call Tanya on 02380 730823.

Genetics clinic update

We continue to meet new families with TSC at the Genetics Clinic in Belfast City Hospital. Claire is always on hand to offer support and information and would love to hear from you if you’ve not already made contact with her.

We're now a member of the Northern Ireland Neurological Charities Alliance: www.ninca.org.uk

Northern Ireland Neurological Charities Alliance - or niNCA for short - was established in 2006 to represent and provide a voice on behalf of people living with a neurological condition in Northern Ireland. And on Monday, March 14, niNCA launched its new website in Parliament Buildings, Belfast. 

Thanks to our membership of niNCA, the TSA is now represented on the Northern Ireland Neurology Network. This network has been established by the Department of Health, Social Services and Public Safety (DHSSPSNI) to ensure the best possible outcomes with long-term neurological conditions, which includes those diagnosed and living with a brain tumour. The purpose of the network is to promote joined up services that make the best use of resources to deliver appropriate treatment and support. We will do our best to keep you updated with all and any developments.

Disability Exhibition 2016

Northern Ireland’s largest Disability Exhibition is back! This year Disability Exhibition 2016 will take place on Friday 3 and Saturday 4 June 2016 at Eikon Exhibition Centre, Lisburn.

Minding Your Head!

For some really great practical information on ways to support good mental health have a look at www.mindingyourhead.info

Fancy a challenge?

If you’d like to raise funds for us and fancy taking on a physical challenge in the process why not look into taking part in one of these fantastic events:

Great Ireland Run (Dublin, April 10)
Tough Mudder Ireland (July 9 and 10)
Belfast City Half Marathon (Sept 18)
Great Fjord Swim (Connemara October 1)

Our fundraising officer Kathryn Harrison will be happy to help you take part in these events and will support you with everything you need to help you to raise funds for the TSA. Kathryn is in the office Tuesday to Friday and you can contact her on Kathryn.harrison@tuberous-sclerosis.org 0161 681 6015.