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.

The Huntington’s Disease Association Awards is our annual event to recognise and celebrate the fantastic achievements of those who support our work and those who support anyone affected by Huntington's disease over the past year. This year's nominees have been chosen because of their outstanding commitment to fundraising. 

We would like to thank our event sponsor FI Real Estate Management. You can read more about them at the bottom of the page.

Fundraiser of the year

Charlotte Conn - Crossfit challenge

During May 2023 Charlotte completed a mountain of a challenge at her local CrossFit club. During the event, which took place on Charlotte’s birthday, Charlotte and her supporters climbed the equivalent of Everest on 20-inch box steps. Charlotte and CrossFit Teesside ensured the challenge was accessible to all, with multiple steps put in place for those who needed it. Charlotte’s mum, who has Huntington’s, climbed the last five steps with the help of Charlotte.

We were in teams and the first team to reach their allocated steps won. The challenge was originally supposed to be climbing Kilimanjaro in honour of my own challenge a few months before but there was such a huge uptake in the event, the owner changed it to Everest. There wasn’t a dry eye in the house, it was incredible!

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Conor Toland - Solo 24 hour cycle

During May last year Conor embarked on his toughest challenge to date, all to raise funds for the Huntington’s Disease Association. Conor cycled unsupported from his front door in Bristol to the most easterly point in the UK, Ness Point in Norfolk in under 24 hours.

The route was over 240 miles. I completed this challenge from sunrise to sunrise, which required an average speed of 10mph consistently throughout the day and night!

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Lucy Craddock - Skydive

In October 2023 Lucy took part in a skydive in tribute to her mum.

My mum, Michelle, passed away in August 2023. Mum was such an amazing person who cared so much about us all. She was the most kind and caring person who we all miss so much. I wanted to complete this fundraiser in memory of her.

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Paul Conn - Snowdonia marathon

Keen runner, Paul took part in several runs to help raise funds and awareness last year. In preparation for the Snowdonia marathon, which took place in October 2023, he entered a trail race every month leading up to it. As a family they personally matched what was raised for the Huntington’s Disease Association on Paul’s JustGiving page and supported HDYO.

There was Stanhope Half Marathon Trail run in July; Gisburn Half Marathon trail run in August; the Grasmere Trail run in September as part of the Maverick Race series. I also started Crossfit sessions with Crossfit Teesside as part of my training.

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William Parkes - TransAmerica cycle

Beginning in June last year William spent 56 days cycling across the United States of America. William said it was the best two months of his life supporting a charity that is close to his family’s heart.

I met so many generous people. Plenty of people welcomed me into their homes to sleep. I also slept in nine churches, a fire station and one women’s toilet when I got caught in a thunderstorm in Kansas. I had countless run-ins with wildlife: I ran over a snake on the first day, had a black bear in my camp in the Appalachian Mountains and I’m 95% certain I was being tracked by a mountain lion in Idaho after I miscalculated a ride and ended up cycling 135 miles in one day.

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Young fundraiser of the year

Cameron - Ben Nevis

Walking enthusiast, Cameron was 14 at the time of his challenge last May. Joined by his uncle the pair decided to walk up Ben Nevis. Cameron wanted to turn his Ben Nevis challenge into a fundraiser and support the Huntington's Disease Association, a charity that is important to him as his auntie is currently battling the illness. Cameron's mum said:

Cameron loves to walk and has experienced some fantastic climbs and enjoyed the views of Snowdonia and the Lake District but when he was offered the opportunity of climbing Ben Nevis he jumped at the chance.

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Ella - School cake sale

17-year-old Ella organised a cake sale for her whole school last May to raise funds and awareness for the Huntington’s Disease Association. Ella baked over 150 cupcakes for her lunchtime sale and organised a raffle. Ella had the support of a couple of friends who donated prizes towards the raffle.

I had a meeting with the headteacher and my tutor and was able to really explain what Huntington’s was and how it affected me.

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Erin - Beads and bobs fundraiser

Erin, aged 11 and her friends from Baden Powell and St. Peter’s Junior School wanted to raise some money and awareness for the Huntington’s Disease Association after the sad passing on Erin’s grandmother in November 2022. The girls decided to create as many bracelets, keyrings, rings and earrings as possible to sell during their break times and lunchtimes. Erin’s dad said:

They all worked tirelessly in the weeks leading up to 7 February to make as many colour variations and styles as possible to stock their stall for two days of sales. A very proud moment for us all.

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Freddie - 25 mile challenge

Freddie, aged six, had been wanting to take part in a challenge to raise funds for the Huntington’s Disease Association for quite some time. His mum had started working at Fairburn Mews on a Huntington’s disease unit, and Freddie had been asking how he could help. The family got their thinking caps on and decided to do a charity walk covering 25 miles throughout December. Freddie’s mum said:

His Dad and I couldn't be prouder of the selfless acts Freddie is always wanting to do. It's an amazing feeling that our little boy is determined to help charities and wants to help people.

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Oliver - Great North Run

Oliver aged 11 joined the masses to take part in one of the most famous races in the world last year. After months of training, Oliver completed the Junior Great North Run in September 2023. He was determined to train and complete the course in memory of his Dad whilst fundraising for the Huntington’s Disease Association. Oliver’s mum said;

When Oliver lost his Dad, Laurence, aged only 49, to Huntington’s disease, he lost his best friend and biggest supporter. It hit him hard and he’s still struggling one year on. Ollie, your dad would have been so proud of you.

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Ollie - Sponsored swim

Nine-year-old Ollie had always wanted to take on a sponsored swim. During December last year, he dove into the challenge, all to support one of his best friends whose family are affected by Huntington’s. Finlake Falls swimming pool kindly allowed Ollie his own private lane for one hour to complete his 1,000 meter (50 lengths) challenge. Ollie’s mum said;

He'd only ever swam 600 meters before, he swam 1010 during the challenge, in 30 minutes, all whilst not feeling 100% after the winter lurgy got him the week before.

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Fundraising group of the year

Gemma and family - Charity ball

In November last year Gemma, mum Dawn, Auntie Tara and Cousin Katie decided to organise a fun charity ball in a bid to stay positive after receiving the news that Huntington’s was in their family.

Back in 2021 my beautiful Mum Dawn and lovely Aunty Tara were both diagnosed with Huntington’s disease. As a family we had never heard of the disease before, and this news completely shook our world. My Mum and Tara are both completely inspirational, and they are both such determined ladies! As you can imagine, hearing of the disease for the first time and trying to take in all the information we could was super overwhelming. The Huntington’s Disease Association has helped us in so many ways by answering any questions we have come across. They have helped educate ourselves, our close family and friends on how is best to cope with Huntington’s being in our family.

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Louise and Katie - London to Brighton challenge

Friends from East Sussex, Louise and Katie took part in the 100km London Brighton walking challenge last May. In July 2022 Louise and her family discovered that her husband, Dan, had inherited Huntington’s. News that turned their world upside down. Louise and Katie wanted to take on this challenging event to raise funds to support the work of the Huntington’s Disease Association.

The Huntington’s Disease Association has been a continuous source of support for Dan and I since receiving the diagnosis.

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Megan and Louise - Robin Hood half marathon

On Sunday 24 September, the pair took on the 13.1 mile course which was dedicated to Megan’s dad.

Everything I do to raise funds and awareness for the Huntington’s Disease Association is because of my darling Dad, who is in the advanced stages of the disease. As well as to show support and solidarity to individuals and families who are also affected.

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Otterburn Care Home - Zip wire challenge

In May 2023 Otterburn Care Home approached Zip World in Wales to help them organise a challenge for a person they care for. Patrick, a resident at the Exemplar care home and self-confessed adrenaline junkie, wanted to take part in a zip wire challenge. The staff at Otterburn went above and beyond to overcome an array of obstacles to ensure the day could go ahead. The home manager, Naomi said:

Patrick was so excited on the lead up to our big adventure to Wales. To help with the planning of this full day, we were showing him videos and website information about the day to fully prepare him for the trip. Our company ethos is to make ‘Every day better’ for our residents and also for our staff so this was an amazing opportunity to showcase what we can achieve for people within our care setting. We wanted to complete a challenge for ourselves that pushed boundaries, fears and obstacles which people with Huntington’s disease and their families face on a day-to-day basis. This challenge proved to us that anything can be achieved with the right team, support, and desire to make it happen. Once the experience was completed, the sense of achievement was overwhelming. We achieved this by not only completing the activity but also knowing we have raised funds and awareness for the Huntington’s Disease Association. It was something special none of us will forget and Patrick still talks about to this day. Anything is achievable if you allow it to be!

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Team Harley - Great South Run

In October last year Harley, from Portsmouth, gathered together a team of friends, family and a Huntington’s Disease Association adviser, to join him in taking part in the Great South Run! Harley was joined by Mum, Vanessa, her brothers in law Paul and Mark Stubbs who themselves have Huntington’s and who are symptomatic. Harley crossed the finish line first having been supported in the 10-mile route by his brother, Eden. As an amputee, Harley relies on his Alinker walking bike to run races like this as he does not have a specialised prosthetic. Harley’s mum said:

Harley participated in the race against the odds as he was recovering from recent ill health. But that didn’t stop him getting a personal best in all his split times including knocking almost ten minutes off his own Official Guinness World Record for the fastest 10K on a seated tri-wheeled walking bike (his Alinker) which he achieved when he first ran the race in 2019. He went on to finish the 10-mile race almost ten minutes faster than his previous time despite it being an unseasonal hot day AND having a puncture on his Alinker walking bike which meant he had to work even harder to complete the race.

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Excellence in health or social care award

Nomination form

2024 awards sponsor

Thank you so much to FI Real Estate Management for being this year's event sponsor.

Tim Knowles, managing director, FI Real Estate Management said:

"FI are delighted to be sponsoring the Awards this year, and to show our support for the incredible services provided by the charity to people living with Huntington’s disease and helping them live a better life."

About FI Real Estate Mangement

As one of the UK’s most established names in commercial asset and property management, FI Real Estate Management operates an extensive and diverse portfolio which covers over 15m sq ft, including 6.5m sq ft of new build developments, across the nation, with assets totalling in excess £1.2bn.