Changing the Conversation:
An Interview with Charlotte Spearing

Highlight from the: EHDN Newsletter_July2026_Issue58

Charlotte Spearing is a UK-based HD advocate, caregiver, and ambassador whose work spans social media, charities, and national and international advocacy and support organisations. Appointed to EHDN’s Executive Committee as its first young adult representative in 2024, she has made it her mission to change the conversation about HD – one post, one presentation, one connection at a time.

How did you get involved in advocacy?
As a member of an HD family, I decided to do a fundraiser for the Huntington’s Disease Association at the age of 18. I Googled what you could do when you were 18 that you couldn’t do when you were 17 – and it said you could go skydiving. So I did a skydive! After checking with my family that they were happy for me to talk about it, I shared information online about why I was fundraising. I found that people were really receptive to learning more about HD. In sharing my own story, I found an online community with lots of opportunities for involvement with different organisations, and I found all of this work personally very rewarding.

Tell us about ‘the HD hun’
This is my advocacy and fundraising Instagram account, set up in 2022. I’d been inspired by other people posting about their experiences in HD families, and realised that in relating to these, I felt much less alone. I decided that if sharing my and my family’s journey helps even one person, then it would be worthwhile.

Although I’m generally quite an optimistic person, I pride myself on providing an honest perspective and not sugar-coating things. My mum is really passionate about openly sharing our experiences of life with HD and helping people understand the realities of the disease. My nan never spoke of HD – even with us – so this openness that we have is hugely different. I find writing very cathartic and often share just my own thoughts. Often, when I’ve shared these thoughts online, people reach out to say they didn’t realise anyone else felt the same way.

TikTok came about by accident! After I got my gene-positive test result, I made a video that I thought nobody would watch. It was basically me describing my HD story, that I’d been tested, and that I wanted to live every day and make the most of life. And that went viral – it’s been viewed by about half a million people! Lots of people started messaging me to ask more about my experiences and to ask questions. My TikTok and Instagram accounts have continued to grow over the years.

What other advocacy work are you involved in?
I became an ambassador for the Huntington’s Disease Youth Organization when the programme first launched in 2021 – now there are ambassadors from over 30 countries, which is just mind-blowing! We started as a small group of people in the community who wanted to share their stories and use advocacy to support other people with HD. The ambassador role comes with opportunities to give presentations, share information on social media, and connect with other people impacted by HD. For example, just last week, I got a message about someone thinking about going through testing. As an ambassador, I was asked if I would like to connect with them directly and share my own experiences, because not everybody feels comfortable messaging on social media.

My work with the Huntington’s Disease Association is quite similar. I also sit on HD-CAB, which is a partnership between the Huntington’s Disease Youth Organization, the European Huntington Association, and the International Huntington Association that allows us to be selected for various advisory boards, such as those for pharmaceutical companies.

I am also part of HD Youth Voice, which is a Huntington’s Disease Association project funded by the National Lottery. Here, we work on various projects for young people impacted by HD across the UK. For example, we’ve developed a teacher guide, which provides information for people working in schools about HD. We’ve also developed an employment guide and initiatives to help support people’s mental health. There are currently 12 of us, and to be involved, you have to apply and be appointed. Sadly, this is my last year because I’m getting too old. And of course, I sit on EHDN’s Executive Committee as their young adult representative, which is exciting!

What is your driving force?
I want to empower the HD community to talk about HD. This doesn’t have to mean talking at conferences or sharing your life story with thousands of people online – it could just be sharing something about HD with a friend.

I know I’m going to have the symptoms of the disease, and I’ve seen it play out multiple times. My great-nan had HD, and I visited her as a toddler in a nursing home. My nan had HD, and I cared for her throughout our time together. Now my mum has it, and I understand what the future looks like for me.

I think it’s really important to grab life by the proverbial horns and make the most of every day. At the same time, I’m doing everything in my power to improve things for the future, not only just for me but for other people as well. I like the idea of leaving a legacy, and I don’t want my suffering or my family’s suffering to be in vain. You lose so much control when you are impacted by HD, and for me, advocacy gives that control back. It gives me a reason to keep going, and I know positive things will come of it. If I have kids one day, I hope they will see a world in which HD looks completely different.

Instagram: instagram.com/thehdhun/
TikTok: tiktok.com/@thehdhun