Raise ataxia awareness by sharing your story this Rare Disease Day
This Rare Disease Day, our aim is to highlight how well-coordinated care can make a real difference in people’s quality of life.
This includes a wide range of healthcare professionals such as GPs, specialist hospital consultants, specialist nurses, physiotherapists, occupational therapists, speech and language therapists and more…
We need your help – sharing your ataxia story can help people understand the difference well-coordinated care can make in the lives of people with ataxia.
About Rare Disease Day 2023
Many rare conditions are lifelong and complex.
As a result, people affected by rare conditions often need support and expertise from a wide range of healthcare professionals such as GPs, specialist hospital consultants, specialist nurses, physiotherapists, occupational therapists, speech and language therapists, and learning disability nurses. This can mean having multiple appointments across different settings and on different dates.
Effective coordination of care is essential to help people living with rare conditions and their families minimise the impact of these appointments on their busy lives and help healthcare professionals to work together effectively to provide high-quality and joined-up care.
3.5 million in the UK are affected by a rare condition, including 10,500 people with ataxia. That's 3.5 million unique stories to tell, or 1 in every 17 people...
Sharing your story...
A fantastic way to raise awareness is to share your story. Tell us how well-coordinated care has or could have made a difference in your life. We also want to hear from family members, friends and carers on the impact of well-coordinated care for someone with ataxia.
There are a few ways to tell your story:
- Write a blog post
- Record a 20-second video
- We are also creating a collage to show how ataxia is many. To be part of the collage, please send a selfie and strike a pose
- Or simply send us a sentence
Read the 'Tell me more about...' section to find out more about each way of telling your story, including a brief and some helpful tips.Â
To submit your story please use the form below, or email our Communications team at: communications@ataxia.org.uk
Tell me more about...
A whole life story is quite a task to write, and to read! Consider your reader and what they want to find out from you. It’s best to focus on something specific in this case, the well-coordinated care and how it has or could've impacted your life.Â
Try to capture the emotive element of your story. People will be able to empathise much more if you write honestly and truthfully about your feelings, which is exactly what we want them to do.Â
Length – the articles can be anything from 200 – 600 words; anything longer might appear too long on the screen, unless you break it up into manageable chunks.Â
Photos – if you have a photo that best demonstrates the topic you are writing about, and you have permission to use it, please send it with your article. If not, a selfie is fine!Â
To submit your story, you can use the submission form below. Either upload it as an attachment in PDF, word, text or other file, or you can past it into the 'blog' post window in the form. If preferred, or you have any issues or queries, you can send us an email at: communications@ataxia.org.uk and the team will be happy to provide assistance.
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To take a video, you can use the front camera on your phone and do this in 'selfie' mode, or you can ask one of your friends or family to take a video of you.Â
The video should be about 20 to 30-seconds in length, and if possible, it should open with the following sentence:Â
My name is [FIRST NAME HERE] & I have [ATAXIA TYPE HERE]. I’m not just one in 10,000 plus people in the UK affected by ataxia. I’m also one of the 3.5 million people in the UK affected by a rare condition. I am the one in 17. This is my story…
The rest of the video should focus on your ataxia journey – with particular focus on how well-coordinated care has or could have made an impact on your journey.
You can send us your video using the submission form below, Alternatively, if you prefer, or if you have any queries, you can send an email to: communications@ataxia.org.uk and one of our team will be happy to assist you.
Please note – we will share your video with our followers on social media channels and other Ataxia UK marketing content, as part of a longer video, containing more Friends of Ataxia UK. For this, we will need your consent. You can provide your consent by ticking a box in the submission form below.
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To take a selfie, use the front camera on your phone and strike a pose.Â
You can upload your photo using the submission form below, or you can email our Communications team at ataxia.org.uk and one of our team will be happy to assist you.Â
This photo will be used for our social media channels, as part of a picture and video collage so we'll need consent from you – this can be done by ticking a box in our submission form.
To write a sentence, focus on a few main points.Â
Introduce yourself, tell us about your ataxia and tell us how coordinated care could or has impacted your life.
When you're happy with your sentence, simply submit it by using the form below, or send an email to communications@ataxia.org.uk
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You can submit your story in your chosen format by using the form below.
However, if you come across any issues or would simply prefer to email us, you can do so at: communications@ataxia.org.uk
One of our team will be happy to help you.Â
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