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NI Newsletter Registered Charity No. 249338

Spina bifida and hydrocephalus charity in Tri-Province launch

The Association for Spina Bifida Hydrocephalus (ASBAH) has successfully re-launched across Northern Ireland as Spina bifida • Hydrocephalus • Information • Networking • Equality – SHINE. The move, which is intended to raise the profile of the charity, its members and awareness of the two conditions, was launched at three separate events in just two days.

Two of the events were aimed at Shine’s members, whilst the third sought to engage professionals working in the health and services sector. With a wealth of speakers on hand to offer their expertise. Dr Roger Baston, Shine Principle Health Advisor, Rosemary Batchelor, Dr Trudi Edgington and Dr Hugh Richards, everyone benefitted from the interaction.

The events, which incorporated both the relaunch of the charity (abbreviated to Shine) and the hosting of an event entitled Hydrocephalus – The Hidden Disability, were an ambitious programme but the feedback was positive from everyone involved.

The occasion of the launch was marked at each event with a Shine cake, each one prepared especially for this historic change. Each cake was cut by invited guests and the ceremonies sealed what were very successful events.

In locating the events in Templepatrick, Lurgan and Omagh, NI Director Cathy McKillop explained: ‘We were keen to ensure we reached as many people as possible through the three events. We worked across Northern Ireland and a total of 250 people attended.’

The rebrand of Shine, which was officially launched on Thursday 20th October, includes a new name, logo and website which all embody the new values and objectives for the charity. For more see – www.shinecharity.org.uk

ASBAH Northern Ireland PO Box 132, Cushendall BT44 OWA Email: northern.ireland@shinecharity.org.uk Contact no: 01733 555988 www.shinecharity.org.uk


Welcome Sandra I was delighted to be appointed to the Spina bifida • Hydrocephalus • Information • Networking • Equality - SHINE NI team on October 1st. It is my privilege to work with a dedicated team and with members across the Western Health & Social Care Trust. My role as Support & Development Worker will focus on supporting families across the Trust from diagnosis and through the various transitions, and also focus on establishing and developing a range of service-user groups according to need and interest throughout the region. I am looking forward to meeting all our members and families and welcome your calls so that we can begin working. Our new name, Shine, reflects the priorities we hope to promote. Information sharing, Networking for the benefit of our members and Equality for all in social, educational, employment and recreational settings. I look forward to working on the promotion of Shine campaigns, Go Folic! and Fit For Success. I have a wide range of experience to bring to the post. I qualified as a Primary School teacher in

Summer Events and Outings The Lurgan parents group visited Castlewellan Forest Park, and 17 Adults and 20 parents took part in the event which included duck feeding, mini-beast hunting and tackling the Peace Maze. The maze was quite tricky with a few families getting confused, but thankfully we didn’t lose anyone! The Carrickfergus Parents Group visited Belfast Zoo. They had a great time watching the monkeys and all the other animals. The Ballymena and Belfast Adult Groups went on a joint adventure to Belfast Activity Centre. The evening’s activities consisted of some team building games, learning basic orienteering skills, completing tasks in relation to signs/symbols and a team task of orienteering with the goal of finding different equipment at each point.

1989 and have 22 years experience across the education sector, from pre-school to Further Education. I have worked with many children with physical and learning disabilities and I am acutely aware of the challenges facing many children, young adults, parents and teachers, particularly in the current climate. While studying for my undergraduate degree I undertook a research study looking specifically at cognitive development in children with spina bifida and hydrocephalus, so I come to the post with a certain degree of knowledge. However, every individual has a unique story and experience and I look forward to hearing your story in due course and working with you to address your concerns. I have worked for the past 12 years with another neurological organisation in Northern Ireland, in a similar role. I am eager to “roll up my sleeves” now and get out to meet you, at group events and individually. I am hoping, with your support, to organise a FUNdraising event in the Spring of 2012 for the Western Trust region – an enjoyable family day out with lots of yellow balloons! I am looking forward to meeting you in the weeks ahead and welcome your calls so that we can begin working together. I can be contacted on 02871 359900 or 07789 616451 and my email address is sandra.campbell@shinecharity.org.uk Best wishes Sandra


Headliners In a recent interview with Amy Coyle (17), from the organisation Headliners, members of Shine talked about how they overcome the everyday prejudices they face. Feeling normal does not mean you will be treated as normal. This is the experience of disabled young people who live with hydrocephalus and spina bifida in the Northwest. Being treated as different is part of everyday life for these young people who experience discrimination in many forms. This creates a confusion for disabled young people growing up in a world where, on one hand being unique is good, but on the other hand if having a disability is what makes you unique it can be a different story. Headliners spoke to members of Spina bifida • Hydrocephalus • Information • Networking • Equality - SHINE about the prejudices they face because they don’t fit the ‘norm.’ And how they have overcome this to be confident and proud of who they are. The girls shared their views on people staring at them and how they refuse to let it get them down. Shannon who is 13 explained why people stare: ‘They stare because you are different and they just don’t like people that are different.’ Shannon described in what way people stare:

Wheelchair basketball blitz The North West Eagles Basketball team hosted a blitz in Magee University with the Northern Ireland Knights and Fermanagh Lakers. The day was full of fun and games with more than 35 participants divided into adult and junior teams. The games were competitive and fun and provided an opportunity for the Eagles players to compete with other wheelchair basketball players from throughout Northern Ireland. A prize giving ceremony for the event was attended by Maurice Devenney, Mayor of Derry City Council. Cathy McKillop, Shine Northern Ireland Director, was very impressed by the day’s performance and proud of Shine’s achievements: “We are delighted to host the first wheelchair basketball blitz in the Northwest. The talent among the

‘They just walk past staring at you and then if they have children the children turn round and they keep staring at you till you are out of sight.’ 12-year-old Caitlin commented on how staring could make you feel: “I think staring is very rude and it does hurt your feelings if people stare. I think people stare because they think you are different.” Rebecca has experienced similar feelings: ‘I think staring is terrible because it could make you feel very low and give you very low self esteem. People stare at me because I am very short for my age and that makes me different to them. People stare then they look away, then they really stare again.’ Despite being aware of the negative feelings disabled people can get, all three girls have learnt how to handle it and would appeal to other disabled young people, to do the same. Shannon’s way of dealing with it is to ‘ignore the fact’ they are staring. She adds: ‘My friends and family don’t even mind it when people stare because they think I can handle it, which I certainly can.’ Caitlyn insists the staring hasn’t stopped her going out and about, however, she did point out that she never goes out alone. Rebecca is an inspiration to all disabled young people who get stared at: ‘It doesn’t bother me that people stare. My friends and family just tell me to ignore the person. They tell me I look beautiful the way I am.’ young people attending is amazing - Paralympics here we come!”


Forthcoming Events December

Dates

For more information on any of these events Email: northern.ireland@shinecharity.org.uk or Contact no: 01733 555988

Events

l

Wheelchair Basketball Magee every fortnight

l 1

Ballymena Adult Group

l 3

Lurgan Group event for Members and Siblings

l 8

Belfast Adult Group

l 10

Carrickfergus Group Event for members and Siblings

l 15

Foyle Party Bowling Alley

l 16

Foyle Childrens Party - Playtrail

Please see www.facebook.com/shineUKcharity for regular updates for events

Fundraising round-up Here is a round up of just some of the fundraising activity in the region over the past few months. We have also received donations from birthday celebrations, anniversary gifts and much, much more. Thank you to everyone for your invaluable support. l The Mid Ulster Vintage Rally was held on 22 and 23 July 2001 and Shine (formerly ASBAH) were selected as their charity for 2011. The amount raised from this event was an amazing £20k. One individual raised over £12k of the total amount. We would like to thank every one who organised and took part in the rally for their extraordinary efforts. l A Craft Fair and Tea Party was held on 8 Oct in Lisburn. The event was organised by Lucinda Mullholland and it raised almost £1700. No one could resist the delicious cupcakes and the event was a great success. l David Donaghey donned his ASBAH running shirt and took on the Belfast Marathon, raising a total of over £1300.

l On 14 October Ben Shanks presented a cheque to Catherine McCurry from Loanends Primary School for £1020. l Right Price Carpets, Coleraine ran a Golf Competition in Castlerock Golf Club. We were selected as one of the charities to receive funds from the day. The event raised £750 for each of three charities and the owner increased this to £1k for each of the charities. l Mark Forrester and Sean Mulvenna both completed the Lap of the Lough and raised over £1300 between them. Mark received £1000 from his employer through the Bombardier Shorts Employees Charities Society. Sean was also backed through match funding by his employer Scotland Gas Networks.


SHINE Northern Ireland Newsletter