Archive for the ‘News’ Category
We are delighted to announce that Dr Shane McKee, Consultant in Genetic Medicine is one of our Keynote Speakers at our Family Conference 2015!
Dr McKee has a special interest in genetic mechanisms of birth disorders and congenital syndromes and is looking forward to meeting and sharing his expert knowledge and experience with our heart families.
To book your spot email email@example.com or go to http://www.childrensheartbeattrust.org/?p=1162. Early bird rates are still available until Friday 25 September!
What a weekend…..
We have just returned (and recovered!) from our second Summer Blast weekend with yet another fantastic group of teens! This year’s Summer Blast took place at Shannaghmore Outdoor Education Centre in Newcastle sandwiched between the backdrop of the gorgeous Mourne Mountains and the Irish Sea – Thank goodness we had the weather on our side!
We kicked off the weekend with the fantastically entertaining Joe at The Gathering Drum who kept us all on our toes and on the beat with his African drumming workshop!
After lunch we all suited up and headed off to Castlewellan with our canoes in tow. We all helped to prepare the boats for some Canadian canoeing and took off in small groups to explore the lough…..and steal Dr McCrossan’s boat! On our way back to dry land our competitive nature kicked in which resulted in a 3-way splash off between each of the boats….fortunately we were all far too wet to work out who won!
Once we all had a much needed shower and some chill out time in the games room it was time for Nightline, we all wore blindfolds and had to put our trust in our teammates under the guidance of our Instructors Leo and George who turned out to be not so trustworthy after all!!
We chilled out on Saturday night with a DVD and lots of well earned munchies as we had an early start the next morning for our high and low rope challenges….The high ropes looked ok from the security of flat ground but once we took in the view at the top of the course the challenge seemed to become a lot bigger! Although the low ropes were a lot closer to the ground they were every bit as challenging…particularly when the alternative to balancing on the ropes was to plunge into a stinky, muck filled swamp…. let’s just say not everyone finished the low rope challenge as clean as they started!!
After a weekend full of fun, laughs, overcoming fears, meeting new friends, trying new activities and a few hundred whoop whoops we have to thank everyone that made this Summer Blast a success; HUGE THANK YOU to Catherine, Jan and Claire our Specialist Nurses and Dr Chris Lockhart and Dr Brian McCrossan for your support over the weekend and most importantly to our fantastic group of teens for coming along and giving your all this weekend….we certainly had a blast and we hope you did too!! CHT Team
If you are aged between 12 – 16 and would like to get involved in our Teen Programme we would love to hear from you! Email firstname.lastname@example.org or come along to our Family Conference on 17th October and take part in our teen workshops!
CONQUER THE CASTLE WITH CHT!
Take on a unique and thrilling challenge of abseiling 100ft down the side of one of Belfast’s most iconic buildings – Belfast Castle! Abseil the tower and take in the spectacular scenery across Belfast Lough and beyond!
By choosing to conquer the castle for Children’s Heartbeat Trust, your commitment, drive & fundraising efforts will make a real difference to children and young people living with heart disease in Northern Ireland. Every pound you raise will help us to maintain our services and support.
We ask all participants to aim for the skies with their fundraising efforts but would ask for a minimum sponsorship of £100 which is used towards our services of care and support to local families. As mentioned we encourage all participants to aim for the skies with their fundraising so if you can raise above this – great!
Clark the Bear is already getting set to Conquer the Castle!
Registration is £30 per person and you can register on-line to secure your place HERE!
Alternatively you can ring or email Lynn for a hard copy registration sheet on 028 9031 2228 or email: email@example.com
Once registered we will send a Children’s Heartbeat Trust sponsorship form and t-shirt to you, so that you can start fundraising!
If you are registering as a group, we will give you registration times after one another for your abseil date. These will be allocated closer to the time.
The Abseil will be fully managed by Bryson Lagan Sports and you will be provided with all equipment, training from qualified instructors, provision of first aid (in the unlikely event it would be required) and insurance cover.
· You must be over 16 years to participate in an abseil.
· If you are between 16 and 18 you need parental consent
· A medical form needs to be completed by all participants before the event
For further information please email firstname.lastname@example.org
Another FAB FUNDRAISER FRIDAY! Thank you again to more of our fabulous fundraisers, family and friends! Here’s another few shots of cheque presentations this week.
We are pleased to announce that Professor Nichola Rooney will be undertaking the role of Chair of our Board of Directors, from which Dr Connor Mulholland recently retired. Professor Rooney holds a number of roles within the Health sector in Northern Ireland including Special Advisor to the Chief Medical Officer and Professional Advisor to the RQIA, having previously worked as a Consultant Clinical Psychologist in the Health Service for over 18 years, culminating in appointment as Head of Psychological Services at the Belfast Health and Social Care Trust.
Professor Rooney may be a familiar face to some of our heart families, as she was the first full time clinical psychologist attached to Clark Clinic and spent a number of years developing internationally recognised support services for families. We are delighted that she is now returning to work with heart families in Northern Ireland once more as Chair of the charity and are looking forward to continuing our work in developing and enhancing provision for heart families with Professor Rooney at the helm.
Again, here’s a few snap shots of some recent events from our Fab Fundraisers. If you’ve had a fundraising event and would like a cheque presentation or would like to fundraise for us, please get in touch with Lynn via: lynn@childrensheartbeattru
st.org or call 074 8337 4910.
Following the success of our Mum’s Pamper Party earlier in the year it’s now Dad’s turn to have a day off and get to know other Dads of children and young people with heart disease. Come along to Jungle NI on Sunday 27th September to take on the treetop adventure challenge and share a bite to eat with other local Dad’s! For more information or to book your space contact Cathy on email@example.com
It’s that time again for FAB FUNDRAISER FRIDAY. Another huge thank you to everyone who has supported us recently with fundraising activities! Here’s a few snap shots of some recent events. If you’ve had a fundraising event and would like a cheque presentation or would like to fundraise for us, please get in touch with Lynn via: lynn@childrensheartbeattru
st.org or call 074 8337 4910.
The all-island Congenital Heart Disease (CHD) Network Board, comprising of patient representatives, clinicians, service providers and commissioners is now meeting monthly. Children’s Heartbeat Trust sit on the Board to represent the views of children and their families from Northern Ireland. The aim of this Board is to develop a world class patient and family-centric Congenital Heart Disease Service for the island of Ireland and the charity will be working hard to ensure that this aim is at the centre of all the work of this group.
Children’s Heartbeat Trust are also Co-Chair of the Family Engagement Group which will feed into the Network Board. This group focuses on family and patient experiences, gathering and presenting feedback as well as communicating changes to the services and important information for families. The first meeting is scheduled for September and is a key way that we can shape the network service from the outset. It is really crucial that we take this opportunity to share your experiences, thoughts and ideas on what is working well and how the service can be improved. Please keep an eye on our website and facebook for ways you can get involved.
Since May 2015 catheterisations for paediatric patients have moved from Belfast to Dublin and are undertaken in Dublin by the Belfast team. By all accounts, both clinical and from families, this transfer has worked well which is testimony to the hard work and collaboration of a large number of clinicians and nurses from both the Belfast and Dublin teams. If you are awaiting a cath appointment you should be contacted by the team in Clark Clinic with all the information you require.
A huge challenge for our heart families is that currently the vast majority of families are still travelling to England for their child’s surgery. Although we have received assurances that when emergency surgery is required this will happen in Dublin, we are pushing for the investment needed to improve PICU capacity in Dublin to reduce the amount of babies, children and families having to get on a plane to access planned care.
Children’s Heartbeat Trust are here to support and represent our heart families during this transition period, so if you have any concerns or questions you can call us on 028 9031 2228 or email firstname.lastname@example.org