There are so many deserving fundraisers within the Huntington's community who have gone above and beyond to raise valuable funds and awareness to support those affected by Huntington's. Without them, we wouldn't be able to do the work that we do so we want to give them the recognition they deserve!
Congratulations to John on winning the fundraiser of the year award. John who is from Lancashire, was part of 2021 #TeamHDA who took part in the Virtual London Marathon. John completed the marathon distance in and round his local area. His friends and family helped celebrate his amazing achievement
afterwards with a party. John, who is a personal trainer, raised over £26,000 from taking part in the race and used social media, friends and family to help raise awareness of the disease.
“Huntington’s is very close to our hearts in our family. We raise money every year to help... We have a number of family members who have been and are affected. It’s our goal as a family to help as many people who are currently living with the disease.”
Lauren was a valued part of #TeamHDA taking part in both the London Marathon and Vitality half marathon. As well as these two runs she organised a hugely successful golf day. Lauren worked tirelessly writing to companies to secure prizes for a silent auction and raffle during the day. Lauren raised an amazing £5,100 last year and has plans for more fundraising in the future.
Throughout the month of August Chyaz, who is from Manchester, set herself the challenge of cycling to the music of 100 different punk albums. Named ‘The Great Pop Punk Cycle’ Chyaz cycled for the duration of albums by Green Day, Avril Lavigne and Red Hot Chilli Peppers to name but a few. Chyaz raised over £1,900!
Joe, from Surrey, took part in the 2021 Winchester half marathon and dedicated the run to his dad. Back in the 80s Joe’s dad would take part in the same race and through their shared love of long-distance running their bond became even stronger. Joe raised over £2,000 from this race and isn’t stopping yet. He has got exciting plans for his #50MyWay challenge which will take place in September.
Daniel, who is from Cornwall, sadly lost both his father and aunt who had Huntington’s disease at the age of ten when they took their own lives. Using the hashtag #HD28for28 Daniel was able to build a wonderful community of people from all parts of the world, from Eastern Europe to the USA. His event has raised over £5,000.
18 year old Mahaila who has autism and Asperger’s took part in #HDHike last year with her sister Lemarnie. The Wiltshire sisters set a challenge of completing 8,000 steps every day throughout the Huntington’s Disease Association’s awareness month in May 2021.
Congratulations to the staff at Kernow House care home who won our fundraising group of the year award. Work colleagues Joanne, Sharron, Alison, Jade, Morgana, Gosia and Rachel braved the elements when they took on their Snowdon challenge. Based in Cornwall these Snowdon hikers work in a care home and see first-hand every day the effects Huntington’s disease has on the people they care for. The group raised the wonderful amount of £1,700.
“We see the devastating impact it has on our residents and their families. Knowing that we have contributed a small but significant bit to improve their quality of life is priceless. The walk itself was very wet and very windy but we all thoroughly enjoyed the challenge. It was worth the effort.”
HD Support Squad
From County Durham the 'HD Support Squad' is made up of Heather and Phil Solan, Lisa and John Guy, Emma and Jason Sunley. Heather and Lisa were part of #TeamHDA London Marathon 2021. In the months leading up to race day the HD Support Squad worked together to raise funds and awareness in their local area. Lisa and John’s daughters took part in a fun run and their dance school sold copies of their Christmas performance DVD and donate the profits to their fundraising campaign. Their fundraising will continue this year with another event already planned.
Scott and George
Scott and George are brothers who are based in Greater Manchester and Cheshire.Their dad was unfortunately misdiagnosed with Alzheimer's disease before they finally found out that he had Huntington’s disease. The brothers agreed that whatever their own outcome, they would support the Huntington’s Disease Association. The brothers decided to take part in 13 different challenges over the next 15 months. From marathons to assault courses.
Warwickshire friends Deb and Debbie rallied a team of 20 pals to raise funds for two charities close to their hearts.The group took to the treetops of Wales to experience the world’s fastest zip wire and raise funds for the Huntington’s Disease Association and Fight For Sight. Deb and Debbie have run a number of joint fundraising events over the years, including skydives, triathlons and charity balls. The pair raised over £3,000 for two charities.
Friends Jessica and Gemma from Norwich and Samuel from Kent took part in a marathon walk for the Huntington’s Disease Association. The walk took place in London and saw the friends cover 26.2 miles in the spooky twilight of Halloween! The group raised over £1,200 to support the work of the Association.
Congratulations to Uisce who won our young fundraiser of the year award. Uisce who is aged 12 and from Essex braved the chop to support the Huntington’s Disease Association because her grandmother is affected by Huntington's. Not only did she raise £900 for the Association but she donated her hair to the Little Princess Trust.
“My nana Nora has Huntington’s disease and over the years I have seen how difficult this is for both her and her loved ones. I wanted to do whatever I could to raise awareness and funds for those like my nana. She is one of the bravest, strongest and smartest woman I know."
Oliver who is aged 11 and from County Durham understood the true meaning of Christmas last year when he asked for donations to be made to the Huntington’s Disease Association rather than asking for gifts for himself. Oliver’s dad has Huntington’s disease and he wanted to help other families who are in a similar position to him. Oliver created a Justgiving page to collect donations and donated money himself.
Lemarnie who is aged 16 and from Wiltshire took part in #HDHike. Lemarnie set herself the challenge of completing 8,000 steps every day throughout May 2021 and raised nearly £400 for the Huntington’s Disease Association as well as raising awareness through storytelling on our blog.
Young entrepreneur Emily is 14 and from Jersey. At the beginning of 2021 she created Bailiwick Flame. With support from her step Mum Sam and Dad Ross, she makes homemade candles, reed diffusers and room mists which are currently selling in four local shops around the island, including the airport. In 2011 at the age of four Emily lost her nana to Huntington’s disease. Emily donates 10% of profits to the Huntington’s Disease Association.
Congratulations to Alex Fisher on winning this award. Alex is a Senior Occupational Therapist who has specialised with Huntington's disease patients for many years. Over the years, Alex has worked closely with the charity and during lockdown she hosted a series of occupational therapy webinars for the Huntington's community. Alex advocates for people living with Huntington's.
Mauveen Jones is the founder of the Huntington’s Disease Association. Back in 1971 it was Mauveen who tried to find a way to support her family and to find other families in similar situations. We are here today thanks to the efforts of Mauveen.
Doreen Spiers is a former member of the Executive Council helping to guide the charity through its changes to embrace the changing world with the introduction of our advisory service, Doreen and her fellow Executive Committee members helped to guide and steer the charity to where we are today.