One huge challenge. Two days. Three of the UK’s highest peaks. Four friends. Five terrible dad jokes an hour.

These four members from the Huntington's disease community travelled 1150 miles, elevated 10,129 feet, hiked 78,000 steps and raised over £5000 for Huntington’s disease charities.

At the start of 2022, Carly, Chloe, Rebecca and Charlotte had never met each other or spoken to one another. They met online, through a mixture of the HDYO Online Congress and their Instagram accounts, where each had shared about their connection with Huntington’s disease. They started a group chat after realising that they all wanted to do a fundraising hike.

“We were brought together by sharing our lived experience of Huntington’s disease and our shared passion for making positive change. We are all impacted by Huntington’s, in different ways but during the challenge, we put the world to rights, shared memories of loved ones lost to Huntington’s disease, those currently battling it and our own futures with it. We learned about each other’s struggles and coping mechanisms to deal with the disease but what an incredible, inspiring, and memorable few days we had.”

They started the challenge in Darlington, where they travelled hundreds of miles by train to meet for the first time. They were driven around the country by Charlotte's dad, Paul, also a carer and somebody heavily impacted by Huntington’s disease. From Darlington to Fort William in Scotland for Ben Nevis, onto the Lake District in England for Scafell Pike and finally to Llanberis in Wales for Snowdon. 

They experienced rain, hail, freezing cold temperatures and even injuries. Upon waking to complete their first climb up Ben Nevis at 5am, the rain was so heavy that they were unsure if they would make it up. Before long, the sun burst through the clouds.

“We are sure our loved ones were looking on us, as we were willing to go through anything to complete the hikes.”

At the top of the peaks, the group shared their accomplishments with their friends and families, FaceTiming them at the top of the mountains to show them the breathtaking views. 

“To say we have completed a challenge of this scale and made friends for life is amazing. We are so grateful to now be connected, as young people who understand everything that a life impacted by Huntington’s disease brings. Being able to come together share our experiences and most of all complete this massive challenge has been the biggest achievement and they have supported me through the toughest time of my life and I will always be thankful for that. We hope to go on some more adventures, to raise more awareness and funds for Huntington’s disease. Thank you to all those who supported us by sharing our pages/stories, donating and the endless kind words of encouragement we received.”

The Huntington’s community is a strong one. Over the years, friendships have formed through Huntington’s support groups, branches, social media and Huntington’s events. This highlights the value of support from those who are in a similar situation. 

We hope that as a charity, through our branch and support groups, online events such as sharing sessions, family voices and carer support groups and in-person branch events that more of our community can connect and form bonds.

"I hope that doing the Three Peaks Challenge and raising money for the Huntington's Disease Association, they can help and support other young people impacted by Huntington's disease.

When I was about 13/14 I met with the Specialist Youth Coordinator from the Huntington's Disease Association who provided my brothers and I support while we were at school, up to my first year of university. Ever since James started he has been so supportive with everything, from dad moving into the care home up to now. The support has been so important whilst growing up and dealing with Huntington's disease - knowing there is someone there who will listen and completely understands makes such a difference! I am extremely lucky to have received such a high level of support from the Huntington's Disease Association, and other charities such as HDYO too. I am aware though that not everyone has this kind of support."

If you are affected by Huntington’s disease and are in need of support or advice, please contact us on 0151 331 5444 or email info@hda.org.uk to speak to one of our Specialist Advisers.  If you are under 25 years old you can access our youth engagement service.

Huntington's Disease Youth Engagement Service.

If you have a story to share, please get in touch with us via email. If this has inspired you to take on your own fundraising challenge but you need advice or assistance, please email fundraising@hda.org.uk.