Young people affected by Huntington's have co-created a powerful new film to help other young people when they first find out about Huntington's disease. 

Huntington's Disease Youth Voice (HDYV) is a group of individuals who seek to improve the lives of young people affected by Huntington's disease through various projects with the Huntington's Disease Youth Engagement Service.  A recent project has been to co-create a film using the principles of co-production.

Co-production – deciding together

HDYV wanted to create a resource for young people who discovered that Huntington's disease is in their family. The film was co-produced meaning the young people decided what the message of the film should be, how they could share the story, and create content. The film was co-edited to ensure it communicated their message.

Joe an HDYV member said,

“Being a part of this film was nothing short of amazing. It allowed me to share my story, to let others know they’re not alone in this journey. Filming was an experience unlike any other, one that I’ll remember forever.”

The film is released on #YoungActionCarersDay a day when the role of young carers is highlighted.

Cath Stanley, Chief Executive of the Huntington's Disease Association said,

I want to extend my heartfelt thanks to everyone who played a role in creating this film. It's an incredible film, filled with hope and a powerful message. This extraordinary group of young people wanted to create a film to help others when they discovered Huntington's disease in their family. Not only have they successfully created that message in the film but they have also captured the unique experience of growing up in a family with Huntington's. This film will help anyone of any age affected by Huntington's.

Thank you to everyone involved for creating this powerful film, 'You are not alone'

For this film, we followed the principles of co-production  

  • Collaboration
  • Diversity
  • Respect
  • Empowerment
  • Involvement

Find out more about HDYV and the Youth Service