Living History Project

We are collecting snapshot stories from people who are living with Huntington’s disease and who want to share what this means to them and their family.

The Living History Project is a digital space for the Huntington’s community to share pictures, words and thoughts on how they feel about living with Huntington's. By creating this space and allowing everybody within our community to post a message or a visual image, we will be able to create a 'living history’ project that will help the wider world understand the impact of Huntington’s disease. 


Why should you take part?


Huntington’s Disease Awareness Month is a time to raise awareness of Huntington’s with the wider public. But it is also a time for the community to come together, to reflect and to show support for one another.

We want to acknowledge the unique impact of Huntington’s disease and help the public understand the challenges that people face. Importantly, we also want to celebrate the strength of those facing Huntington’s disease.

We are excited to have a space that helps show the world what living with Huntington’s disease is like. Contributions from the Huntington's community can play a part in that and help build better awareness and understanding.


What do you need to do?


We want you to contribute to this project in a way that is meaningful to you. You can contribute as an individual or as a family. You can send us a photo, some of your own words, a poem, a drawing, or something else altogether!

We would love for you to give a small insight into your world. We’ve provided a list of ideas below but we would love to be inspired by you!


What to do next?


If you’d like to contribute, please email our communications team at [email protected]. If you have something in mind to send you can just send it on to them now, if you have a query, they will be happy to help!


Ideas and inspiration!


  • A poem that speaks to you - or even a poem you have written yourself
  • A selfie with your family or support bubble
  • A message from you and your family – or even just your family name and region
  • An inspirational or motivational quote
  • A drawing or piece of art 
  • A picture of something that reminds you of family or your support network
  • A quote from your favourite book that reminds you of strength
  • An old family photo
  • A new family photo
  • An image of footprints or handprints or something personal to you
  • Extracts from a letter or note
  • An anonymous message of support

The list is endless as it could be absolutely anything meaningful to you! If what you send us isn’t quite right or is too big we may have to come back to you and suggest some tweaks – e.g. sadly we don’t have room for short stories.

To learn more about the project and to find FAQs, click here