When we were told daddy had huntingtons disease the HDANI charity reached out to my family, that organisation has now grown to an amazing organisation that I am honoured to be apart of!!
I decided to organise a fundraiser, my f riends and family got involved and at 15, this was a great distraction for what was going on!! It helped our community understand what was going on with daddy and also my family. We gathered information and got in contact with our local charity for some help, with the support from our community we raised 1500 pounds.
At that time there was not the information online that there is now, Google was full of horror stories!!
I have volunteered for HDANI for several years, and have been given different levels of responsibility. In 2014 I decided I wanted to be on the board and get more involved, so during the annual conference they asked did anyone want to nominate themselves for the board, and I put my hand up!
It was overwhelming and half times I felt like I didn’t understand, but being my usual self I asked a million questions! When I was entering my final year of university I stood down off the board because I wanted to concentrate on my studies! in total i was on the board for four years, and loved this time.
I have obviously started #imnotdrunk and it takes up a lot of my time, but I still love working with HDANI. I help with the youth events, and organised their Halloween event, which I think went well!! As i have experience working at a summer camp in America i was able to bring ideas to the HDANI youth group. i understand the importance of looking after the youth affected by Huntingtons disease. when i was 14 there was very little help out there, the chairty was there but on a smaller level. HDANI can now provide a youth counsellor and two support workers, which is amazing! All age groups are looked after. I remember being a moody teenager, when an adult would try to relate and talk to me about what was going on, I felt like they didnt understand. When I spoke to someone slightly older than me, going through the same thing, I found it easier to relate and felt they understood more. I love seeing the youth counsellor connect with the kids, the laughter and fun we have as a group warms your heart.
I have organised different fundraisers, if you check out my fundraising ideas blog post there’s a list of some I have done. I have attended many events to do with Huntington’s disease and plan onattending many more!
I recommend all my readers to get involved with their local organisation, they can offer you support and advice, provide you with information and connect you with people going through similar situations. I have made so many amazing friends with in my local HD community, and I find it helps me put a positive spin on this entire experience.
Here in Northern Ireland we have many events, this week I’m going to meet up with everyone for Christmas lunch. We have many events through the year, the youth events are around three times a year and the annual conference. There are also many fundraisers the members organise throughout the year, so there is always something going on.
I am hoping this year that I will be able to attend the HDSA annual convention, they have amazing events through the year and I am very excited to attend the Hope Walk at the convention.
I truly enjoy being at events with the youth and seeing them enjoy themselves, seeing them get the support that wasn’t really available years and years ago when I was that age. I love attending events for the adults, chatting with them; comparing stories and getting excited about the advances in research etc.