International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. Ataxia could be the most serious condition you have never heard of.
Ataxia is a rare disease or condition of the cerebellum, the part of the brain that controls planning, and executing movements of your body. Problems with the cerebellum causes lack of coordination, lack of balance, and difficulties with speech.
Ataxia is a Greek word meaning, “Lack of Order.”Wikipedia
So, What is Ataxia?
Ataxia is a Greek word meaning “Lack of Order.” Our mission at Ataxia and Me is to bring back some order to the lack of order in the lives of Ataxia patients. Ataxia and Me are a patient focused charity (registered UK charity number1184030) based in West Wales with a global following. I indeed we have seen our posts and images being shared around the world, and even translated, in to various languages!
Internattional Ataxia Awareness Day
During the, month of September, we see an immense number of social media interactions with the hashtag #IAAD (International Ataxia Awareness Day), and sharing of our #AtaxiaAdvent hashtag on social media. Ataxia Advent Calendar is our yearly campaign where we post one fact per day about Ataxia, and these have gained many positive comments. As a result, we have added animated video content to the #AtaxiaAdvent this year.
Work Experience Team
Following discussions with Cardiff University, and their Work Experience team, to help create work study placements for university students. We have developed a plan, looking at placements of students, to help progress the work of Ataxia and Me forward, as well as enhancing the students experience. To our joy and surprise, we received eleven (11) applicants for the first years cohort!
Team Ataxia (English) and Tîm Ataxia (Welsh) is a successful team, fundraising, participating in numerous worldwide projects, and virtual, socially distanced events, all of which spread more awareness of our work and projects within the larger Ataxia community.
Our Logo: Why a Brain?
Our logo, an image of a brain with the cerebellum, the part of the brain which creates the issues that make up Ataxia, are highlighted using a tessellation of Hexagons.
We hope you’ll join us today and every day in raising critical Ataxia awareness both online, and off, with in the global community! Please reach out to us if you would like to contribute your Ataxia or rare disease story to this blog! We’re open to submissions from patients worldwide to help spread greater awareness!