NI NewsletterReg Charity No 249338 Spring 2015

Celebrating World Spina Bifida and Hydrocephalus Awareness DayWe had a superb day celebrating World Spina Bifida and Hydrocephalus Day at the Guildhall in Derry/Londonderry. To mark the day, we hosted a handshake chain as a demonstration of support and acceptance of diversity within our community, and to celebrate our members’ achievements. Everyone braved the rain to gather at the Guildhall, where we were greeted by Lord Mayoress Cllr Brenda Stevenson and Shine members were taken on a guided tour of the Mayor’s Office.

Benny Bear joined us on the day to celebrate and greet members and supporters, including Pat Ramsey MLA and Mark Durkin MP who kindly joined us at the Millemium Forum. Even though the rain fell, our members did not allow this to dampen their spirits and there was a fantastic celebratory atmosphere on the day.

Following the Guildhall event, we enjoyed a family fun day at the Millennium Forum. The hall

was a hive of activity throughout the afternoon, with several craft stalls and entertainment for our members, including a clown show which proved very popular with the children (and the adults!). Jo Jingles also popped in to entertain us all and everyone sang along and enjoyed the activities.

Shine’s very own Marie McGonnell held a flower demonstration assisted by Mark Durkan, and they both produced beautiful halloween flower displays, which were raffled at the end of the day. Those in attendance were able to treat themselves at our cake sale and were also able to get fully pampered with a manicure and reflexology sessions. We would like to thank everyone who attended the events, and those who donated items and their time to make the day a great success!

Shine NI PO Box 132, Cushendall BT44 0WAE: northern.ireland@shinecharity.org.uk T: 01733 555988 W: shinecharity.org.uk

Benny Bear

celebrating!

Heather sadly left Shine NI in November 2014 to new ventures. We wish her all the best for the future.

Best wishes to Heather

Raising awareness of ShineAs part of Spina bifida and Hydrocephalus Awareness Week 2014, Shine NI held an information and awareness morning on Tuesday 21st October in the Long Gallery, Parliament Buildings, Stormont.

The event was sponsored by First Minister Peter Robinson MLA and Pat Ramsey MLA. Mr Robinson opened proceedings, and having met many of our members prior to giving his speech, he remarked how positive each and every individual was that he had met, and how each had overcome their own individual challenges to reach their personal goals.

Mr Robinson was followed by Shine NI Director Cathy Mckillop, who emphasised the importance of prevention of neural tube defects. Following Cathy’s emotive speech, four Shine members spoke to the audience about their life experiences. This included Lisa Michelle Haddock and Blaise Hughes, who both have spina bifida and hydrocephalus, and have been involved with Shine since birth. Both Lisa and Blaise have been supported by Shine throughout their lives. Lisa has completed her education having

gained a third-level education and Blaise is in the midst of studying to achieve his. Lisa stated, ‘For as long as I can remember, support for both my parents and myself has always been there from the staff at Shine NI, formerly ASBAH, whether that support was physical, mental/emotional, or social. I consider these people as not only staff who in effect work for me as a service user, but moreover valued friends.’

Maria Mulholland, whose sister Grace has spina bifida, provided an insight into what it was like to have a sibling with the condition and expressed her joy at watching her little sister grow up and achieve each milestone in her life.

Kathleen McCallion from Derry/Londonderry, whose daughter Seanian has spina bifida and hydrocephalus, provided the final presentation. She said, ‘For us, being told her diagnosis, we were honestly completely devastated. Sean and I feel that it’s the type of thing that can either make you or break you. With Shine, I met Marie McGonnell first; she just reassured me so much and spoke to me about a lot of things Shine can do. Shine also provides the opportunity to meet other children and other parents that are going through the exact same emotions as us, and it’s reassuring to know that we are not alone.’

Seanian also attended on the day, and she captured the hearts of everyone, with her infectious laughter throughout the morning!

Fearghal McKinney MLA closed the session and spoke of how amazed he was at how resilient the speakers had been and what a fantastic impact members of staff had on the lives of those they worked with. He also vowed to address the topic of Neural Tube defects in the assembly.

2

Shine NI meets Stormont

‘It’s reassuring to know that we are not alone.’

Kathleen McCallion

Stormont updateFollowing our Awareness morning in Stormont, Fearghal McKinney MLA asked the Minister of Health, Social Services, and Public Safety if he had considered the fortification of grain in order to contribute the prevention of spina bifida. From this question, it was agreed that the minister would work with Shine in the future on this motion.

3

Lloyds funding for Shine’s health projectWe were delighted to have received a £4000-grant from Lloyds TSB Foundation of Northern Ireland for a health and wellbeing programme, which will be rolled out in the west of the province with emphasis on County Fermanagh. The presentation was made at Stormont by the Executive Director of the Foundation, Ms Sandara Kelso-Robb. Ms Robb wished Shine ‘continuing success with their excellent work, supporting those in need within the community.’

Lloyds Foundation Executive Director presenting the grant to staff

Shine’s radio stars

We were delighted to be chosen as Radio Ulster’s October Charity Appeal and our appeal was broadcast to mark the end of Spina bifida and Hydrocephalus Awareness Week 2014 on 26th October. Local members Kathleen McCallion and Perpetua O’Driscoll had a fantastic time recording interviews with the Radio Ulster team. It provided an insight into living with spina bifida in Northern Ireland and the assistance that Shine has provided with them. The interviews were extremely emotive and have raised awareness of both spina bifida and hydrocephalus to a wider audience – an extremely fitting end to what was a very busy and successful Awareness Week! For those who may have missed the broadcast, the interviews can be found using the links below.

Cathy McKillop W: http://bit.ly/BBCCathy Kathleen W: http://bit.ly/BBCKathleen

Perpetua W: http://bit.ly/BBCPerpetua

Mind Your Head across NISix events were organised throughout Northern Ireland last year to promote mental wellbeing among our adult members. The events have took in Ballymena, Newry and Belfast, Dungannon, Omagh and Derry/Londonderry covering all of the trust areas in NI.

Members were given the opportunity to learn more about coping strategies when dealing with stress, anxiety and depression and to realise they are not alone when they experience these issues.

Each event was well attended and feedback was very positive. The events also offered members the opportunity to meet new people and learn from one another. We are hoping to host similar events in the future so keep an eye on our communications.

Shine’s radio stars

Lisa’s time to Shine Lisa Haddock has been an active member of Shine throughout the years. Here, Lisa explains how she has found living with spina bifida and hydrocephalus.

‘If I were to sum up life as a young adult living with spina bifida and hydrocephalus in Northern Ireland in one word, that word would have to be “isolating”. Due to my condition, I developed epilepsy probably as a result of repeated brain surgeries. This means that I am unable to drive for the foreseeable future at least. The area of town I live in is served by an irregular bus service, making getting around particularly difficult.

Having recently started out on married life, I am learning a whole new set of life skills, no different to someone who doesn’t have a disability.

Through the various activities planned by our local staff from Shine, I have been introduced to services available to support people like myself and others in my community with spina bifida and hydrocephalus to improve my independence and meet other individuals in a similar position to remind me that I’m not alone.

I have learned that no matter who you are or what you are experiencing, you are as entitled as anyone else to a life of joy and happiness – a disability does not define who we are; that choice is ours.’

Lisa and others will be carrying out an immense fundraising challenge on 28 February, virtually spinning from her home town of Antrim to Shine’s head office in Peterborough, which is a total of 420 miles! If you wish to support Lisa and her team, please contact Cathy McKillop E: cathy.mckillop@shinecharity.org.uk

Changes to contact detailsAs many of you will be aware landline numbers are no longer in use, so please contact staff on their mobile numbers or by email on the following:

Cathy McKillop, NI Director ShineE: cathy.mckillop@shinecharity.org.uk T: 07762 574861

Dolores BlackE: dolores.black@shinecharity.org.uk T: 07816 966866

Catherine McCurry, Education AdviserE: catherine.mccurry@shinecharity.org.uk T: 07789 616486

Marie McGonnell, Health AdviserE: marie.mcgonnell@shinecharity.org.uk T: 07789 616420

Janet Davidson E: janet.davidson@shinecharity.org.uk T: 07764 969747

Pamela Dickey E: pamela.dickey@shinecharity.org.ukT: 07816 966863

Postal Address: Shine Northern Ireland, PO Box 132, Cushendall BT44 OWA

4

Fundraising update We have had a fantastic few months of fundraising events occurring across the country, from Concerts to Prize Sheep Celebrations! Many thanks to everyone for organising events and to those who donated and gave so generously. A huge thanks also to all our schools and businesses that held a Wear Yellow and Shine day as part of Awareness Week 2014. Lots of fun was had by everyone and all proceeds will be used by Shine NI to ensure that we can continue to provide services to people affected by spina bifida and hydrocephalus.

I have learned that no matter who you are or what you are experiencing, you are as entitled as anyone else to a life of joy and happiness

If you haven’t already joined us on facebook, ‘like’ us today at C facebook.com/ShineNorthernIreland