Hello! First of all, thank you very much for agreeing to write a blog for Ataxia Aware! You may not realise it, but your decision to share your story with us could mean the world to someone else as they may be relatively new to ataxia and rare diseases and your experience could help them immensely. 

Please use this guide to help create your blog:

Issues to avoid: 

In your blog post, please can you refrain from mentioning the following: 

• Politics 
• Overly mentioning religious views 
• Profanity
• Giving medical advice (it’s okay to refer to your own personal experience and give non-medical advice)

Title: 

Please feel free to select your own title which summarises you and your own story. Here are some recent examples of titles we have had: 

• I Am Successful On Paper: João Gaié
• If Brooke Can Do It, I Can Do It: Brenda Cavanaugh
• Never Forget Who You Are: Tony Matos 
• Emily’s 427 Mile Trike Ride with Ataxia 
• Lisa Antonelli Cole’s Long Journey to Diagnosis

Images: 

We would love it if you could include some photos for your blog. These will be used on our website and also on our social media to create a teaser post for your blog. Pictures could include yourself, a family photo, and/or a picture of an event you have participated in. If you do not wish to include any photos, please do get in touch with us and we will talk about a potential solution. 

If you have any previous experience writing, then please feel free to tell your story in your own way, while following the guidance already included. You can send any drafts to be checked over to: 

info@ataxia-aware.org 

If you would like further guidance, please continue to read. 

The Blog Post Guidance: 

As part of the Ataxia Aware Project, we are sharing personal accounts of those suffering with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experiences with their disability, whether themselves or someone close to them.

Introduction: 

Feel free to use your opening paragraph(s) to introduce yourself to people who may be reading your post. You are welcome to state your name, age, your occupation, hobbies, passions, summarise why you are writing a blog post, etc. Allow people the chance to get to know who you are. Do you have a rare condition? Are you sharing a family member’s story? Are you a carer? Here is an example below:

My name is Kirsty and I am twenty years old. I am a third year English Literature and Creative Writing student at Cardiff University. I have a huge passion for musical theatre and love performing at any opportunity I can! I wanted to write this blog to help people understand rare conditions like Ataxia, though I do not know anyone who is suffering directly from Ataxia, I want to help raise awareness for the condition and get people talking about it.

Main Body:

Share your story. Your journey to diagnosis and/or your mental health. Only talk things you are comfortable with sharing. Any events that you have participated whether that be for charity, for yourself or both. We encourage you to plug your own social media if you have a podcast talking about rare conditions, you have created a Facebook group, you have a YouTube channel, etc. You could post any comments or messages that you wish you had heard when you were diagnosed.

If you’re still struggling here are some questions you could answer to help write your blog. Please use as many or as little as you like. You DO NOT have to use any if you do not wish to: 

• How long did it take you to get a diagnosis? Have you had a lot of experience with misdiagnosis?
• Is there anything that has surprised you about having ataxia/rare diseases? 
• What is the level of support for ataxia/rare diseases where you are in the world? 
• What is the biggest way that ataxia/rare diseases have affected your everyday life? 
• What are some of the challenges that you face? 
• How do you manage to stay positive? 
• Has the diagnosis affected friends/family? 
• What advice would you give to someone who has just been diagnosed with ataxia/rare diseases? 
• Is there anything that you are particularly proud of? 
• What are your hopes for the future? 

Ending Note: 

Please fill out our ending note with your relevant details to conclude the blog. Please indicate any Social Media platforms/accounts that you would like promoted. If you would not like your social media included please leave it blank.

We would like to thank (YOUR NAME) for sharing their inspirational story with us. If you would like to know about (YOUR NAME) be sure to follow them on Twitter/X (@), Facebook (@) and Instagram (@).

If you would also like to get involved and share your experience with Ataxia or other rare condition, please get into contact with us through our social media linked below:

Instagram: @Ataxia_Aware

Facebook: https://www.facebook.com/search/top?q=ataxia%20aware 

If you have any further questions, comments or concerns please do not hesitate to get in touch with us and we will try to get everything sorted out. You can get in touch with us at info@ataxia-aware.org.