HDYO has more information about HD available for young people, parents and professionals on our site:
On the 17th December 2010 me and a large group containing family, family friends, school friends from Sweyne Park School and a teacher too, also including two dogs, did a Christmas theme walk to raise money for The Huntington’s Disease Association. We walked from The Anchor pub in Hullbridge to The Marlborough’s Head pub in Rochford and back again although we took a different route on the way home which gave the total number of 21 miles, it was tiring at the end but it was worth it! Everyone who joined the walk kept the spirits high and everybody was more than happy to join me in the journey to raise money. Overall, I raised over £2000 which I feel would have a major impact on the research to find a cure, which I know everyone who is affected by Huntington’s either themselves or a loved one, wishes and hopes for every day, we need to raise money to make these wishes come true!!
I would like to share my story with everyone and what made me start doing a fundraiser. In May 2010 my dad’s HD got really bad and only had a few days to live, so sadly on May 24th 2010 peacefully at 6.00ish that morning my dad sadly passed away from HD. There was no help for this kind of illness so it over took his body and shut it down bit by bit, when he got to his last days it was so hard to sit there by his side knowing there was nothing for me to do to help him be here a little longer. A few months passed and a year on I decided to do a sponsor skydive of 10,000feet in aid of HD. I may not of been able to help my dad, but I know that raising money for his illness would of made him happy and proud. I managed to raise a total of £460.00, and in June 11th 2011 at Perenporth in Cornwall (UK) I done my jump, the view was amazing and it took my breath away with every moment. So I am very grateful with all the people that helped me raise the money.
I did my first fundraiser last year, because I felt I just wanted to do something more. I decided to go with a golf tournament since that is something my dad (who has HD) and I really enjoy doing together. I began planning a bit late but just wanted to do it. I organized the tournament solely on my own in about 2 and a half months and raised $1700. There were a total of 42 players and I was able to send everyone home with a prize.
The London Chapter support group applauded me and encouraged me to put another tournament on with their help. So another girl from the support group and I organized the tournament this past year, making sure to give ourselves a lot more time for organizing/collecting prizes/players etc., and we ended up raising over $6000! It feels great to help out the cause so close to our hearts.
Fundraising for The HDA is something that’s always on my mind. No matter what I’m doing or where I am, I will always be thinking about my next fundraising project. I’m the sort of person that, if I have an idea, I want to make it happen, and I want everyone to know about it, determined is probably the word, determined to find a cure for this disease which is eating away at my family. 2010 was the year my fundraising portfolio started. I organised a charity disco, bag packing in local supermarkets, street collections & at the age of 15 I was one of the youngest people to run The Great North Run 10km. However this year saw me organise my biggest fundraiser for Huntington’s disease to date, I called it High Diversity. High Diversity was a charity variety performance which had an amazing line up of acts, including dancing dogs, gymnasts, impressionists, dancers, singers & so much more, it was the biggest charity event to hit my town in a few years. The event took off to levels I couldn’t even imagine, everyone wanted to help promote ‘Northallerton’s biggest charity event of 2011" so because of that I appeared in the paper 5 times, 2 BBC radio stations, BBC Look North News & the event was the talk of the town. The supermarket I work for, Sainsburys, paid for the venue hire, which was a massive help and very generous of them, many stores around my area donated something to the raffle I held on the evening, I even ended up with a brand new bike! I was so grateful to everyone who made a donation & helped pay for the event, just proves there is support out there and you don’t have to go at anything alone!
Organising the event was tough, but beneficial. The most complicated part was probably getting bums on seats, but I think my press release helped encourage ticket sales. Finding acts was difficult too, but by word of mouth we managed to get some amazing acts to entertain our crowds!
Everyone was saying they were proud of me and how its an amazing thing I was doing, but all I wanted to do was raise awareness for Huntington’s Disease & raise some cash to help with the research into a cure of this very life controlling disease. In my eyes there is a cure out there, people just need a little help in finding it!
In a couple of years im going bigger, an outdoor festival! I’ll keep you guys updated!
Thank you all for your support,
One of my events to raise funds for the NYA was skydiving. I had noticed that here in the US, it wasn’t something that you see very often for fundraising purposes and being that it was something I always wanted to try, I figured it was the perfect fundraiser to do! So I started researching skydiving for charity online and found a non-profit organization that was then called SkyDive4Free.com. What they did was help set up to raise funds through their website to send to the organization of my choice and when I reached at least $500 raised, then they set up a skydive for me with a company in my area. They were basically the go-between company to get everything set up, it was easy and great!
I raised my money by posting the link to the website on facebook, by contacting the local newspaper and having an article done and also by contacting the local news station and they were interested enough in my story to come out and do a story on me for skydiving for a cure for HD. I raised a total of $1100. It was honestly the funniest fundraiser I’ve ever done! And it motivated me to continue on with my fundraising.
On March 11th 2009 I took part in a sponsored skydive in aid of the Huntington’s disease Association. I did this in support of my mother, who has been suffering of Huntington’s disease (HD) for 15 years, but also in remembrance of those who have been taken from us and are suffering from HD. Overall £920 was raised and sent to the HDA to help support awareness of this disease. At the time of my tandem jump I was 16 years old.
I enjoyed my skydiving experience and was in high spirits that I had raised money to support awareness for Huntington’s disease. The support I received was amazing, my friends and family helped me raise a lot of money for HD and I enjoyed every minute of the skydive and would definitively do it again!
So I decided to gather some money for HD last year. There are charity events almost every weekend where I live. Therefore I had to create a new and exciting event in order to gather a good crowd. I decided on an all male waxing night. My local pub let me hire for free. And they also paid for the DJ and food. Which cut a lot of the costs. 14 of my very good friends volunteered. Some had their legs waxed, chest, and one even volunteered his eye brows. I made posters to advertise and asked local shops for donations for the raffle. My friend is a beautician so she did all the waxing safely, and this also had no cost to me! People auctioned the strips and highest bidder got to pull it off…to much delight of some of the bidders! I think everyone should try something like this. It was a great night and with the help of everyone we managed to raise almost £3000!
Hi all, my name is Danielle Smart, I am 24 and live in Hertfordshire. My mum suffers from HD and was diagnosed 9 years ago. When I found out about mum, I didn’t know anything about the disease, or how massively it would affect mine and my family’s life. Coping with everyday life is hard, and the guilt I personally feel when I’m not around is hard, but I know my mum, deep down is happy. We couldn’t ask for a better set of family and friends to help us!
Our fundraising as a family started with a 'fish 'n’ chip' supper and raffle at our local community hall and raised about £500, which my dad organised. The year after my dad organised a Dinner and Dance for family and close friends at my old dance school. We raised £5000. The year after I wanted to take the reins and organise the event. I am a born organiser and am an events manager at a hotel, so I thought, why not give this a go.
We are into our 4th year at Bishop’s Stortford Football Club holding the annual Dinner and Dance. I organise everything from, writing the hundreds or letters and emails to companies each year for donations for my raffle and auction to balloons and table plans for the night. The majority of my event is word of mouth and I have a fantastic family and friend base that invite everyone they know. Without my family and close friends I would never have been able to raise the £50,000 we have managed in 5 years!
My raffle prizes range from Cutlery Sets, TV’s, hairdressing vouchers, books sets and designer bags. My auction prizes range from holidays, to signed football memorabilia, to a meal for 10 cooked in your own home by my wonderful cousin Christian, who trained to be a chef with Jamie Oliver. This prize is so big it fetched £1700 last year in my auction! The night is all about my mum and trying to get the awareness out there for more support for HD. There isn’t enough.
In 2010 myself, my sister and a few close friends and family members walked from Sawbridgeworth to Big Ben, this was 35 miles and took 11 hours!! Exhausting! But we raised £4000! Amazing experience!
This year it’s over 40 miles from Bishop’s Stortford to Buckingham Palace in one day- and my dad is doing it with us :) which makes me so happy, he is training so hard! Anything is possible, and if anyone needs advice or help with fundraising I would always be there to help!
I would like to add a HUGE thank you to EVERYONE that helps me on a day to day basis and with fundraising. My family and friends are THE BEST ever and I love each of you so much.