Help to celebrate the amazing support of our volunteers fundraisers by voting in this year’s Huntington’s Disease Association Volunteer Fundraiser Awards.
There are two categories in this year's awards:
Please read about the achievements of each nominee below and then cast your vote via the link at the bottom of the page for who you think is the most ‘Most Inspiring Volunteer’ and 'Young Volunteer of the Year'.
The vote will close at 5pm on Friday 22 June 2018.
Thank you to everyone who has supported the HDA – we wouldn’t be here without you!
Thank you to our headline sponsor Exemplar Healthcare and award sponsor PJ Care for making these awards possible.
Sisters Hana and Georgia Blackley, from Dorset, organised their second charity ball in support of the HDA in October of last year. The evening took place in the Orchid Hotel in Bournemouth and they both worked tirelessly to secure prizes for a raffle on the night. The pair also gained support from Nationwide Building Society who made a generous donation.
The sisters are all too aware of Huntington’s – their grandfather has sadly passed away and their father and uncle are currently living with symptoms. They are both committed to supporting people affected by Huntington’s disease in their local area and are planning another ball this year.
Linda, an experienced runner from Bedfordshire, was diagnosed with Huntington’s disease in December 2012, after which she was supported by our Specialist Huntington’s Disease Advisory Service.
Linda took part in the 2017 London Marathon to raise money and awareness of Huntington’s – her seventh and last. She said her aim was to raise both awareness and funds to help others affected by Huntington’s.
Rupert Hare, from Devon, laid down the gauntlet to his friends and suggested they take part in the ultimate UK cycling challenge - Land's End to John O'Groats. They are a tight knit group, knowing each other since their university days over 30 years ago.
In May last year they got on their bikes for the epic journey. With all having turned, or about to turn, 50, it presented a great challenge but also an ideal opportunity to raise funds in honour of two of their friends, twins Chris and Mark Wood.
Rupert spearheaded a team of four who completed all nine days of the challenge. The task averaged 107 miles a day, winding through the backroads between Cornwall and Scotland. Another 15 friends dropped in and out for various stages including Charlie Allison, Sarah Winckless, James Alston, Justin Damer, Richard Venables and Rob Williams. The whole event was ably supported by Rory Macpherson and Dan Battershill in their Enterprise van full of goodies, and smelly kit.
The whole event attracted amazing support and the team would like to thank Julia and Simone, the wives of Chris and Mark.
Clarke Hobbs, from Bristol, who works for Highways England, organised a 24 hour static cycling challenge last October. His team of nine covered 508 miles in order to complete the length of their motorway patrol route. The team were joined by colleagues from their control room, service delivery, media team and senior management who took it in shifts to cycle on two spin bikes day and night throughout the 24 hour period.
This event generated a lot of press coverage and certainly helped to raise both funds and valuable awareness of Huntington’s disease.
Anthony Jarman, a keen runner from West Sussex, has been an avid supporter of the HDA for a number of years.
Last spring he donned his trainers and took part in the Brighton marathon. Although it wasn’t his first time taking part (he has run the race 4 times!) he completed the course in a brilliant time, adding to his fantastic fundraising total and continuing to raise awareness of Huntington’s along his running routes.
Anthony also has a collection box in his place of work, a music shop in Brighton, where he has encouraged donations from his customers for a number of years.
Sports therapist Nikki Love, from Nottinghamshire, completed the epic challenge of running 63 marathons in 63 days. Nikki started her attempt in August, hoping to break the world record for most consecutive marathons completed by a woman. The challenge took her across the country and took over nine weeks.
Nikki was motivated to raise funds for the HDA during her mammoth challenge as her friend Dirk has Huntington’s disease, and she had promised him the next “crazy” event she did would be for the HDA. Nikki kept her promise to Dirk and finished the world record attempt in October, having covered a staggering 1650 miles across the length and breadth of the UK.
Helen Martin, from the Isle of Man, dedicated a whole year to fundraising for the HDA.
She organised a charity night where she ‘braved the shave’ in front of a packed room of supporters. During the night she ran a cake sale, hugely successful raffle and karaoke sing along. Helen secured match funding for the funds raised during her event as well as securing a very generous corporate donation from a local business.
During a darts festival she raised a great amount of money from a bucket collection, also helping to raise public awareness of Huntington’s.
Helen added to her fundraising total by going alcohol free for six months, after which she celebrated by organising an 80s themed disco, which included a raffle with prizes donated by local companies.
Helen also was able to secure two bucket collections at a bowls festival in June and September, where she also sold raffle tickets.
Helen has worked tirelessly throughout the year to raise funds and awareness in the Isle of Man.
Partners Nicky Swift and Mark Newnham, both actors from Kent, worked tirelessly last year to raise funds and awareness.
Nicky joined #TeamHDA after securing one of our London Marathon charity places, and spent the months leading up to the day training hard and raising as much money as possible towards her fundraising target. Nicky’s determination helped her cross the finish line, where she was cheered on by family, friends and their dog Lenny.
In the lead up to the race and in the months after, Nicky and Mark used their contacts from the theatre world to secured bucket collections in theatres cross the UK. Mark secured a week long bucket collection with his fellow cast members of musical ‘Sunny Afternoon’ in Wolverhampton. After each performance Mark bravely shared his story, explaining his personal experience of Huntington’s disease to a sell-out audience, who donated very generously. The pair also rallied local HDA members and family to help with a collection at the Theatre Royal in Brighton, after the final show of the touring musical ‘All or Nothing’, another show Mark was involved in. Not only was the collection successful but the theatre company itself matched what was raised on the night. Nicky and Mark continue to raise funds and awareness for the HDA throughout the country.
Alison Sheen, is an activity co-ordinator based at Bryn Ivor Lodge Care Home in Cardiff, who has Huntington's in the family, committed to organising as many fundraising events as possible last year and secured the HDA as their charity of the year.
With the support from her colleagues, Alison ran numerous raffles, cake sales and pamper days throughout the year to raise funds. She also organised our local HD Specialist HD Adviser, Kay Holmes, to give an information session to help increase knowledge and awareness.
Alison lost her father to Huntington’s disease and this has had a huge impact on her and her family. As well as her amazing fundraising efforts Alison has been involved with Repair HD, a research project based in Cardiff, which she says has helped her come to terms with her diagnosis.
Keen cyclist Martin Thorpe, from North Yorkshire, was kept busy last year taking part in a triathlon, a 175 mile tour of Yorkshire Wolds and the ride Birmingham cycle event.
Along with teammates Kevin, Christopher and David, Martin donned HDA cycle tops to help raise funds for people affected by Huntington’s in Yorkshire. Martin was inspired to take on his solo triathlon having previously competed as part of team. With the support of his team mates he achieved this and more.
Clare, from Hertfordshire, was only too willing to help and support the Huntington’s Disease Awareness Week charity collection on the London Underground last May. Arriving at Leicester Square tube station fresh from a radio interview, where she was raising awareness of the disease and charity on the airwaves, Clare hit the ground running for a long day collecting donations. She enlisted her husband and the pair worked long hours collecting and endured aching feet to help us raise much needed funds and increasing the visibility of the charity during Huntington’s Disease Awareness Week.
Clare has also volunteered to share her story to give others an insight into what it is like living with Huntington’s in the family.
Carrie-Anne, from North Yorkshire, had a very busy year fundraising for the HDA.
Carrie-Anne successfully gained a ballot place for the Great North Run half marathon, in Newcastle, and quickly began fundraising to gain sponsors. Having never been a runner before, Carrie-Anne found the training for the Great North Run challenging. With help from the couch to 5k phone app, the love for her Aunt and Granny and sheer determination, she completed the race in a finishing time of 2:39:56.
As part of her fundraising, hair stylist Carrie-Anne ran an evening dedicated to hair, beauty and headwear. The glamorous event was a chance for her local community to learn tricks of the trade and take home valuable tips and advice for wearing headwear. The evening ended with a fantastic raffle and a show stopping catwalk, all in aid of the HDA.
During Huntington’s Disease Awareness Week Carrie-Anne hosted seven days of cake sales in the salon where she works where she also promoted the Light It Up 4 HD campaign, helping to raise awareness and shine light a light on Huntington’s in her local community.
Wisdom Bowers, from North Yorkshire, spent the summer washing cars to raise funds and awareness for the HDA. Wisdom, who is 12, transformed people’s dirty cars into pristine machines because he has seen first-hand the help the HDA has given to families affected by Huntington’s disease.
Lily-Grace Griffiths, from Wrexham, took part in a 10 mile walk to raise funds for the HDA. Along with members from her local karate club, Lily-Grace, who is 12, trekked through the Ceriog Valley near Llangollen. Lily-Grace wanted to raise funds for the HDA and her local club as they had been so supportive after her Grandfather was diagnosed with Huntington’s. Lily overcame her fear of heights when she crossed the Pontcysyllte Aquaduct twice during her 10 mile walk.
Chloe Martin, from Derbyshire, donned her apron and grabbed a mixing bowl for a massive cake sale in aid of the HDA. Chloe, who is 14, took on the big job of baking all the delicious treats for her coffee and cake event herself. She held the event in memory of a close friend of her Grandad who lost her battle with Huntington’s disease two years ago.
As well as this she applied to local businesses for prizes she for a raffle, as well as purchasing prizes herself.
Katherine Pringle aged 12 from North Yorkshire, took part in the famous Yorkshire three peaks challenge to support the HDA last summer and completed it in less than 12 hours.
She conquered the highest peaks in Yorkshire, Pen-y-Ghent, Whernside and Ingleborough, in the wind and rain - climbing about 1,600 metres (5,300 feet) and walking 40km (23 miles) in the process!
Jessica Webb, a self-confessed chatter box, from Hampshire, took part in a sponsored silence to raise funds for the HDA. Jessica who is 13 spent a total of 6 hours and 30 minutes in complete silence to help and support people with Huntington’s.
Jessica has seen the vital support given to her family by the HDA and wanted to do all she could to raise funds and awareness to help other families.