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Contribute to our ‘living history’ project for Huntington’s Disease Awareness Month!

The Huntington’s Disease Alliance, which consists of The Huntington's Disease Association of Ireland, Huntington's Disease Association Northern Ireland,  Scottish Huntington's Association and Huntington's Disease Association (England and Wales) are working together on an Ireland and UK wide awareness project, the Living history Project, that will launch in May 2021 for Huntington's awareness month.


What is the Living History Project?

We are starting work on a unique project to mark Huntington’s Disease Awareness Month and we need your help!

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.

We are building a digital space for the Huntington’s community where we will collect pictures, words and thoughts on how you feel about the way Huntington’s affects you and your family. We want to create a special shared space for people and families living with Huntington’s disease. 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 wonderful ‘living history’ project that will help the wider world understand the impact of Huntington’s disease. 

Why should I do this?

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 us as a community to come together, to reflect and to show our support for each other.

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

Our digital space will reflect all our experiences of living with Huntington’s disease. We are really excited to have a particular space that helps show the world what living with Huntington’s disease is like. Your contribution can play a part in that and help build better awareness and understanding that could help us all.

What do I 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 and perhaps in particular, your family. We’ve enclosed a list of ideas below, but we would love to be inspired by your ideas!

I want to contribute, what do I do next?

If you’d like to contribute, please email our communications team at 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 about family 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 – something you have done or something someone in your family has drawn
  • A picture of something that reminds you of family/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 that is personal to you
  • Extracts from a letter or note
  • An anonymous message of support

The list is endless as it could be absolutely anything that is 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!

Do I need to give my name?

No, absolutely not. We expect that some people will give their name and other people will choose not to. We would like to hear from as many people as possible and if you want your contribution to be anonymous you can just tell us when you send it in. If you forget to tell us, don’t worry, we will check!

How long have I got to contribute?

We will be collecting contributions up to the end of May. The website will launch on 1st May so you won’t be able to see everybody’s contributions until then.

Who will see my contribution?

Once the website goes live it will be in the public domain so anyone will be able to see it.

When you send us a contribution we will send you back a consent form to secure your consent to display it on the website, and also to ask you if you are happy for us to use your specific contribution on social media. It is entirely up to you whether you want us to share your contribution in this way. We are very grateful for all contributions and there is no obligation for you to say yes to social sharing.

What exactly do I need to send?

  • A photo file or e.g. poem directly typed onto email
  • A short caption – ideally no more than 20 words (this will appear underneath your contribution)
  • A credit – your name and region or just your name, can be first name only, or just ‘anon’ (this will also appear under your contribution)
  • Your email address just so that we can get back to you (not for publication)

Community Survey

We are also carrying out a community survey to understand the impacts of living with Huntington’s disease. This survey is open to you if you have direct experience of Huntington’s, whether you have a diagnosis or a gene positive test result, if you may be at risk, or if you care for a loved one with Huntington’s or have somebody in your family who has Huntington’s, even if you have tested negative yourself.

Responses to this survey are completely anonymous and it should only take 5 minutes to complete Survey

Any other questions?

If you want to ask anything else at all about this project please get in touch with our communications team at who will be happy to help!

Make sure you’re following us on social media  Twitter   Facebook to hear more. We hope you enjoy our ‘living history’ project and we very much hope you will be able to take part.



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