New Huntington’s Disease Alliance awareness campaign – Get involved in Living History Project
This Rare Disease Day we are introducing you to our upcoming national awareness campaign that will launch in May 2021 for Huntington’s Disease Awareness Month. This has been organised by the Huntington’s Disease Alliance UK and Ireland, which consists of The Huntington's Disease Association, Scottish Huntington's Association, Huntington's Disease Association of Ireland and Huntington's Disease Association Northern Ireland, who have teamed up with project funders, Roche. To prepare for this, we are starting work on a unique project, the Living history Project, and we need your help!
What is the 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.
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. 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 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 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. Your contribution can play a part in that and help build better awareness and understanding.
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. We’ve provided a list of ideas below but we would love to be inspired by you!
I want to contribute, what do I 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.
FAQs
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 1 May 2021 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 to ask 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 ‘anonymous (this will also appear under your contribution)
- Your email address just so that we can get back to you (not for publication)
Any other questions?
If you want to ask anything else at all about this project, please get in touch with our communications team at [email protected] who will be happy to help!
Make sure you’re following us on social media 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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This Rare Disease Day we are introducing you to our upcoming national awareness campaign that will launch in May 2021 for Huntington’s Disease Awareness Month. This has been organised by the Huntington’s Disease Alliance UK and Ireland, which consists of The Huntington's Disease Association, Scottish Huntington's Association, Huntington's Disease Association of Ireland and Huntington's Disease Association Northern Ireland, who have teamed up with project funders, Roche. To prepare for this, we are starting work on a unique project, the Living history Project, and we need your help!
What is the 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.
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. 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 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 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. Your contribution can play a part in that and help build better awareness and understanding.
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. We’ve provided a list of ideas below but we would love to be inspired by you!
I want to contribute, what do I 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.
FAQs
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 1 May 2021 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 to ask 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 ‘anonymous (this will also appear under your contribution)
- Your email address just so that we can get back to you (not for publication)
Any other questions?
If you want to ask anything else at all about this project, please get in touch with our communications team at [email protected] who will be happy to help!
Make sure you’re following us on social media 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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