A successful day in Parliament for the Huntington's Disease Association.

In November 2025, we organised a Parliamentary event in order to garner the support of MPs across England and Wales and encourage them to become Huntington's Disease Champions. We would like to thank Helen Maguire MP for sponsoring the event and enabling it to take place.

We had a total of 27 MPs join us at the event. Each signed a pledge to become a Huntington's Disease Champion and advocate for their constituents on issues such as the importance of access to treatments in the future, and in the short term, the need for enhanced care and support for those affected by Huntington's.

We were also joined by pharmaceutical companies, Huntington's disease specialists, staff of Parliamentarians (bringing our MP total to 36), and members of the Huntington's disease community.

Cath Stanley BEM, Chief Executive of Huntington's Disease Association, opened the event with a summary of the importance of needing support from MPs, especially in the light of recent research news. We heard from Professor Ed Wild, National Hospital for Neurology and Neurosurgery and Professor Liam Gray, Cardiff University about the uniQure AMT- 130 trial, how the operation takes place, future plans and what this means for the Huntington's community. 

We heard from community member Annette who has struggled for care for her family over the last 15 years. This 'postcode lottery of care' is what we are trying to change. Her talk was joined by another attendee who shared his emotional battle for adequate care for his family.

The event was a complete success with lots of MPs showing real interest in Huntington's disease, each going away with knowledge of the disease and the work we do. We want to thank each and every one of them who signed up to be a Huntington's Disease Champion. This is just the start in our mission to improve care for those affected by Huntington's.

One attendee said:

Wow that was the most amazing experience! It was such an amazing day and I’m so grateful to have had the opportunity to go and raise awareness.

The event was such a success because of the hard work our Policy and Public Affairs team put into organising it and lobbying MPs but it could also not have been done without the help of our community. Thank you to everyone who wrote to their MP and for those who attended to represent the charity.

We also want to say a big thank you to our sponsors, Wave Life Sciences and Ferrer for Good.

Event gallery