Each year we come together to celebrate the incredible work of fundraisers, professionals and volunteers working to support people in the Huntington's community.

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 is a very special event as we also celebrate ten years of the Huntington's Disease Association Awards! Our nominees have been selected 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.

Excellence in Health or Social Care

Community Group Award

This year, we are extremely pleased to launch our Huntington's Disease Association Community Group Award. Our volunteer-led branches and support groups are an essential part of our charity and we are recognising their excellent contribution to the local Huntington's disease community. Through delivering local meetings, events, emotional and practical support our branches and support groups play an important part in people's lives.

Fundraiser of the Year

Azhar Khan - Everest Base Camp

Azhar, from the West Midlands, has been a long-time supporter of the Huntington’s Disease Association. Towards the end of last year, he took on the long and challenging overseas trek to Everest base camp. Unfortunately, Azhar took seriously ill during the challenge and was not able to complete the trek. A keen fundraiser, Azhar has taken part in a variety of events over the years including Hadrian's Wall trek, Skydive, 100km 24 hour race and a 100-mile West Highland Way walk.

There is more than one path to the top of the mountain. I will continue finding new paths in raising money to support families and carers while raising awareness of this disease. It gives me comfort in knowing that the money I raise helps families in their time of need.

Eric Church - Trek, Dance, Trek

Eric, Treasurer for the West Midland Branch, started his ‘Trek, Dance, Trek’ challenge with a four day long 200km Nijmegen Marche in the Netherlands. This event is the largest multiple-day marching event in the world. In September, Eric and his wife Kim travelled to the Balearic party island of Ibiza to complete 30 hours of dancing together. They wanted to complete the 30 hours of dancing to represent the movements experienced by those who have Huntington’s disease. The challenge ended in October when Eric completed a difficult and challenging trek to Everest base camp.

The fundraisers make me feel good and enables more opportunities to spread awareness of Huntington's disease and to raise funds for the Huntignton's Disease Association and its work in helping these affected and their families.

Em Torry - Cycling the Hebridean Way

Em from Devon took part in an epic cycle challenge last May in support of the Huntington’s Disease Association. The challenge saw Em cycle from Vatersay to the Butt of Lewis on the Hebridean Way, 248 miles of glorious scenery. Taking place during Huntington’s disease awareness month Emma covered ten islands, six causeways and travelled on two ferries.

An unforgettable adventure and an opportunity to raise vital funds as well as highlight the charity along the way.

Ian Rock - Isle of Wight Coastal Path Challenge

Ian is a PE teacher and lover of the outdoors from the Isle of Wight. In May 2024 he decided to take on a 73 mile challenge. Ian knew he wanted a physical challenge and one that would inspire his students. He decided to walk the entire outline of the Isle of Wight to raise as much money as he could, to help the Huntington’s Disease Association support as many families as possible.

After discovering in November of 2023 that I had inherited Huntington’s disease, I felt I needed to face a challenge, to give me something to focus on. The point of my plan was to raise as much awareness of Huntington’s disease and the Huntington’s Disease Association as possible. I wanted to inspire my students, to show them that things that seem hard or impossible are possible if you keep on trying and don't give up! I used the challenge to show all our students (on three different school sites) what I had completed and to speak about Huntington’s disease and the need for resilience in any challenge they may face.

Sarah Hood - The Atlantic Rally for Cruisers

From the 24 November until the 22 December last year, Sarah who lives in Hampshire completed an Atlantic Rally to raise funds and awareness for the Huntington’s Disease Association. The Atlantic Rally for Cruisers (ARC) is not just a challenging ocean crossing but also an opportunity for sailors to raise awareness and support for important causes. Sarah, who is Huntington's positive, took part in the four-week transatlantic challenge alongside her husband and two other crewmembers experiencing sunsets, rough seas, starry nights and catching their own dinner while raising funds for the Association.

I've been having a go at plotting and navigating…conditions have been mixed, from very rough seas that tested our endurance, to smooth seas with 360 degree clear views. The adventure was both demanding and exhilarating, and I'm proud of how I navigated the journey.

Young Fundraiser of the Year

Casper Breaks - Snowdon Hike

Casper is from Lancashire and was eight when he took part in a hiking challenge up Mount Snowdon. Casper wanted to take part in a fundraising challenge as the Huntington’s Disease Association had been supporting members of his family for many years. So in May last year he travelled to Snowdonia to take on the hike. Casper's mum said:

I was so proud of Casper when he suggested climbing Snowdon for charity. And even prouder when he suggested supporting the Huntington’s Disease Association. His family and I are so proud of him and how well he did.

Davy Shaw - 20 mile cycle

Davy's grandfather passed away in November 2023. Davy had planned to complete the challenge earlier in the year however suffered a fractured wrist. Davy would not let this injury stop his fundraising and moved the cycle until later in the year when his wrist had fully recovered. Davy’s Dad said:

As Davys parents both his mum and I fully support and encourage his charitable work, Davy has supported many charities and it’s been a pleasure to see him set up this latest challenge for Huntington’s Disease Association on his own and see it being executed.

Elizabeth, Lucy and Charlotte - Summer Fayre

Classmates Elizabeth, Lucy and Charlotte were 10 when they decided they wanted to raise funds for the Huntington’s Disease Association. During the summer of 2024 these friends from Kent decided to use their school’s summer fayre to help raise awareness and funds. Elizabeth’s mum said:

We were incredibly proud to find out that our daughter wanted to raise money for the Huntington’s Disease Association. They chose this particular charity as Huntington’s is something that has directly affected Lucy’s family. The girls approached their head teacher with their fundraising idea and she was blown away by their kindness and initiative. Before the School Summer Fayre, they set to making a huge amount of loom band bracelets to sell on their stall and organised a “guess the name of the bear” game to raise even more funds. The stall was a success and we know that the girls are proud of their achievement.

Ella Daynes - Cake sale

Ella is from West Yorkshire and was eight when she decided to organise a cake sale to raise funds for the Huntington’s Disease Association. Ella’s mum said:

When Ella heard the news about her grandad being diagnosed with Huntington’s disease her first instinct was what can I do to help? She worked so hard to raise funds and awareness in school at home and everywhere she went! We are so proud of her achievements!

Heidi Hawkins - Snowdon Hike

Heidi from Northampton was ten when she took part in a hike up Snowdon in April last year. She wanted to raise funds for the Huntington’s Disease Association as she has family members who have been affected and wanted to do something positive to help. Heidi’s first attempt was abandoned due to dangerous weather conditions. However, never one to give up Heidi battled through high winds, determined not to let anyone down and completed the hike.

Heidi has seen some close family members affected by Huntington’s disease. Me and her dad were super proud when she asked if she could do some fundraising to help. Heidi really wanted to challenge herself and after some thought we decided what better way to incorporate Heidi’s love of the outdoors and a big personal challenge than to climb Snowdon! Heidi was so brave on the day, battling against high winds and tough conditions but she managed to get to the top. She is so thrilled to be nominated for young fundraiser of the year, it's great recognition for the kind, caring and courageous girl she is.

Harrison Owens - Bristol Channel Swim

15 year old Harrison from South Glamorgan braved cold waters towards the end of last year when he took part in a swimming challenge to raise funds for the Huntington’s Disease Association. The teenager is one of the youngest people to have ever completed the 12-mile swim across the Bristol Channel. Harrison's mum said:

When Harrison told us he wanted to swim the Bristol Channel 15.2 miles, we thought that was extraordinary in itself. Touched by his uncle's recent Huntington's diagnosis he jumped at the chance to marry the two together, swim and raise funds. His swim was a major feat in itself 7hrs 18 mins of gruelling arm motions, but a staggering £3500 raised from consistent updates rallying the troops. We are immensely proud he became the youngest person to achieve this.

Ollie Edmondson - Hike up Roseberry Topping

Ollie from the North East was ten when he took part in a hiking challenge to raise funds for the Huntington’s Disease Association. In April last year, with his auntie, Ollie walked up Roseberry Topping in memory of his nana and great auntie. Ollie's mum said:

When Ollie had the idea to raise money for Huntington’s Disease Association we were so over the moon and he did an amazing job we are so unbelievably proud of you kiddo.

Jessica and Isobel Williams

Cheshire sisters Jessica and Isobel wanted to take on a fundraiser that would test them physically last year. In August 2024 when they were ten and six, they took part in the York Kids Triathlon to show their support for their Gramps. Their dad said:

We were already very proud when Jessica and Isobel said they wanted to take part in a triathlon, however, when they told us that they wanted to make it a fundraiser for the Huntington's Disease Association we were so pleased. They worked so hard training for the event and at raising as much money as they could. Their mum and I are really super proud of what they have achieved and raised. Well done girls.

Fundraising Group of the Year

Cliffy’s Challenge

Hannah, Karen and Lyn are the lead members of the group who created ‘Cliffy’s Challenge’. Based in North Yorkshire the group have organised and taken part in a variety of challenges to raise funds in memory of Cliffy. As part of their fundraising Hannah, who hates flying, took part in a skydive, Lucy ran the Great North Run and there was a golf day in October. The funds raised by the team have been used to support people affected by Huntington’s in their local area of North Yorkshire. The group have inspired other friends, family and members of their local community to take on their own challenge in memory of Cliffy. Hannah said:

Cliffy has asked in his memory for family and friends to take part in 'Cliffy's Challenge' to raise awareness of Huntington's disease and gain vital funds for Huntington's Disease Association in his local area.”

Dal Padda and Team’s Skydive

Dal, from the West Midlands, and her team took part in a skydive last October in memory of her son Amo who had Juvenile Huntington’s Disease. Amo, who lost his decade-long fight in May 2024 was a self-confessed ‘adrenaline junkie’ and had already taken part in a skydive himself. Before his passing, the family were arranging another skydive for him so that he could raise funds for charity. Taking part in a skydive, on his birthday to raise funds for the Huntington’s Disease Association not only was the perfect way to remember and celebrate his memory but also a way to carry on his wonderful legacy. Dal’s team comprised of her daughter Sim and family friend Sarina. Sarina showed extreme bravery as she went from supporter and spectator to jumper overnight as another member of the team pulled out. Dal and his carer's said:

I know my Amo would be so very proud of us right now if he were here with us. We don't know how else to celebrate his birthday but to do something he loved, and I know it will be a very difficult time - the first of everything without him is heart-breaking, but we want to remember him the "happy and sarcastic" way he always was.

Do It For Dom - It's a Knock Out Day

Graham and Suzanna are part of a team called ‘Do It For Dom’ and last summer organised an ‘It’s a knock out’ style event for the property industry which raised an incredible £30,000 to support the work of the Huntington’s Disease Association. The group, who are best known, as ‘Do It For Dom’ have been long-term and loyal supporters of the Huntington’s Disease Association for over seven years. Over the years, they have trekked Snowdon, Canoed 33 miles on the River Wye, and tackled three mountains (Mam Tor, The Great Ridge and Win Hall Walk) in 24 hours. Suzanna trekked Kilimanjaro, Kristian Byfield dressed as a Viking for events, Mark Bevan took part in a cycle challenge and a team took part in the Agent Giving Dragon Boat Race. Graham said: Their 2024 event was inspired by School Sports Days. They took a stroll down memory lane took part in Egg and spoon and sack races, a wheelbarrow race, an assault course and a ‘foam attack obstacle challenge’. Graham from the Do It For Dom Team said:

We're a close-knit community in the property industry, spanning various roles - estate and letting agency professionals, software developers and business owners. Over the past 20-30 years, we've formed strong friendships. When our good friend Dom was diagnosed with Huntington’s disease in 2017, Suzanna suggested a get-together or ‘something’ for Dom. The ideas started and we formulated a plan. Dom said nobody would join, but we had other ideas... and it became even bigger than we expected. Since 2017, we have now raised a total of £300,000 for the Huntington’s Disease Association.

Lauren and Ari Hadjikkou and Siobhan Daly

Long-time supporters Lauren, Ari and Siobhan, based in Hertfordshire, have been organising a golf day that will be entering its fifth year. As a family though their fundraising has spanned nine years nearly raising £50,000 for the Huntington’s Disease Association. During 2024 Ari took part in the London Marathon and Lauren ran the Brighton Marathon. During September, Siobhan’s friend Lorrie took part in the Salcombe Gin Sprint triathlon. As well as this the family make regular monthly donations, play our charity lottery and turn up to be part of our London Marathon cheer team year on year. Lauren said:

The Huntington’s Disease Association have supported us through the years in all of our journeys in some form. They gave us lots of help and advice for Dad when he was alive. We get useful and extremely knowledgeable local advice from our advisor Anna and the support groups with Rachel, as well as support and resources from Hannah and the fundraising team. In a world where sadly most people have not heard of Huntington’s, we could not have done it without them! This is a small way for us to try and give something back.

2025 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.