RARE Insights

International Ataxia Awareness Day

24/9/2020

We are very proud to be supporting and making some noise for Ataxia and Me our charity partners as we help in raising awareness for the rare neurological condition. The charity has a focus on `patients helping patients` to bring benefits to all affected by the rare neurological condition of Ataxia. Although, the main focus is Ataxia - they also incorporate associated rare disease and movement disorders. The broad scope of this platform gives a more holistic view of the information available to benefit the wider community of people affected by this "life limiting" neurological, invisible condition.

We caught up with our friend Alan Thomas founder of Ataxia and Me on all things Ataxia, he shares with us some exciting news and tells us how the charity is raising awareness this year with an exciting month long campaign! September 1st saw the launch of the #AtaxiaAdvent which has created a buzz on the run up to their awareness day.

International Ataxia Awareness Day (#IAAD) is on September 25th of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease.

Alan Thomas, Founder Ataxia and Me

Ataxia could be the most serious condition you have never heard of.

So, What is Ataxia ?

Ataxia is a rare disease / condition of the Cerebellum, causing problems with the lack of coordination, lack of balance and difficulties with speech.

A message from Alan

"Ataxia and me are a patient focused charity (1184030) based in West Wales with a global following, We have seen our posts and images being shared around the world and even translated, by some into their own language.

"#TeamAtaxia (English) #TîmAtaxia (Welsh) is a successful team name for fundraising projects and events, (online this year, due to COVID19) which is a very recognisable project within the Ataxia and me community, along with our logo, which is an image of a Brain with the Cerebellum (the faulty part) highlighted, all using a tessellation of Hexagons."

Ataxia is a Greek word meaning "Lack of Order"...our mission is to bring back some order, to the lack of order
Alan Thomas, Founder Ataxia and Me

"During the month of September we saw an immense number of Social Media interactions, sharing of our #AtaxiaAdvent social media campaign where we post, one fact per day, about Ataxia these have gained many positive comments, as a result we are adding more interactive content to the #AtaxiaAdvent , for this Awareness day."

Exciting times ahead..

Following discussions with Cardiff University Work Experience team, we have developed a plan into looking at placements of students to progress the work of Ataxia and Me, as well as enhancing the students experience. ( 11 applicants for this years cohort!)

As a valued member of the Rare Revolutionaries community Ataxia and Me helped contribute to the creation of this handy Top Tip resource which has been shared at conferences and within healthcare settings all around the world!

We understand that attending countless hospital and medical appointments can be exhausting, demoralising, fraught with anxiety and at times tedious for families living with rare disease. Whether it is a first appointment or part of a long-standing patient - clinical relationship, here are the Top 10 Tips according to our community, to help make the process that little bit easier.

To get in touch and find out more about Ataxia and Me and their mission
please use the buttons below:

0 Comments