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How to take part in our ‘living history’ project for Huntington’s Disease Awareness Month

Thank you for your interest in contributing to this unique project to mark Huntington’s Disease Awareness Month. Together, we will create a wonderful ‘living history’ project that will help the wider world understand the impact of Huntington’s disease. 

It will feature snapshot stories from people across the UK and Ireland who are living with Huntington’s disease and who want to share what this means to them and their family.

 

We are now inviting you, as a member of the Huntington disease community, to share your pictures, words and thoughts about how you feel about the way the disease affects you and your family.

Why should I do this?

Huntington’s Disease Awareness Month is a time to increase understanding about Huntington’s disease with the wider public. 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.

The digital space will reflect all experiences of living with Huntington’s disease and help to show the world what living with Huntington’s disease is like. Your contribution will play a part helping to build better awareness and understanding that could help us all.

What do I need to do?

We want you to participate in 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.

I want to contribute, what do I do next?

If you’d like to contribute, please email the communications team at huntingtons@mandfhealth.com. If you have something in mind, please just send it on and they will come back to you. Or if you have a query, just get in touch.

If what you send isn’t quite right or is too big, a member of the team may have to come back to you and suggest some tweaks, for example, 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, please just let the team know when you send it in. If you forget, don’t worry, they will check back in with you before publication.

How long do I have to contribute?

We will be collecting contributions up to the end of May. The website will launch on 1 May and you will be able to see everybody’s contributions 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, the team will send you back a consent form to secure your permission 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, for example, a piece of writing 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 so that we can get back to you (it won’t be published)

Any other questions?

Please get in touch with our communications team at huntingtons@mandfhealth.com who will be happy to help!

Make sure you’re following news of the project on SHA’s Facebook, Twitter, Instagram and LinkedIn social channels to hear more.

Thank you!