A day in the life of a young person from our youth voice panel at our Parliamentary event.
It was such an honourable experience being able to represent the HDYV at the House of Parliament and it was a day I’ll remember for the rest of my life. It’s still such a pinch-me moment that I was part of such an inspirational and important day.
In November 2025 we hosted an event in Parliament in order to raise awareness and garner support from MPs across England and Wales. This event allowed some of our volunteers to attend on behalf of the charity.
Hosting an event in Parliament gave us the opportunity to raise awareness amongst policy and decision-makers from across England and Wales. It also allowed some of our volunteers to attend on behalf of the charity.
HD Youth Voice is a volunteer programme that gives young people the opportunity to shape the future of the youth engagement service, HDYES. They work on multiple projects with the charity, including co-producing work and helping to raise awareness. They use their own personal experiences to help others and also get the chance to meet other young people who have gone through similar things to them.
Amye is a volunteer for HD Youth Voice who was invited to attend Parliament to represent the board of young people. She has shared with us how the event in Parliament was for her as a young person and a volunteer for the Huntington’s Disease Association.
Amy's experience from the event
"The day was amazing. The event began with a talk about the results from the uniQure trial to raise awareness of this among the MPs. Following this, a family who was impacted by Huntington’s disease very bravely gave a talk on their experience with Huntington's disease. This was so inspiring and heart-warming to see. It can be so hard to speak about personal experiences, but it showed the impact that Huntington’s disease has on both the people affected and the people around them.
It was amazing that people were from all different backgrounds such as the Huntington’s Disease Association, specialist Huntington’s nurses and doctors and also families impacted. All connected through the disease and having the opportunity to come together and help make a change for the future.
During the day I got the opportunity to meet other ambassadors, healthcare professionals and also Professor Wild and Professor Tabrizi, who have recently been working on the first successful treatment. It was something I’ll be forever grateful for the opportunity to say thank you on behalf of families impacted by Huntington's disease like my own. It was very emotional as I didn’t think I’d ever get the opportunity to thank them.
Following the event, a number of MPs became Huntington’s Disease Champions. This will have such a big impact on the awareness in areas across the country from the government."
Thank you to Amye for sharing her experience with us.
A special thank you
We would like to thank Helen Maguire MP for sponsoring the event and enabling it to take place and all the MPs who took the time out of their day to come and join us at this event or who had a member of staff representing them on their behalf.
We also want to say a big thank you to our sponsors, Wave Life Sciences and Ferrer.
Read more about the event
Meet the MPs who are our Huntington's Disease Champions
Awareness
Parliamentary event 2025
Awareness, Campaigning, Professionals