Action for A-T have joined forces with A-T organisations around the globe for the first international campaign raising awareness for Ataxia Telangiectasia. The campaign, led by the Spanish based Aefat, encourages A-T families from all countries to use the full term for the condition “Ataxia Telangiectasia” to give visibility to this rare incurable disease, help raise awareness and funds for research.

The theme of the campaign is “What is not named does not exist”. Families of children and young people with Ataxia Telangiectasia around the world want the name of this rare disease to be known. So that it doesn’t take years to get a diagnosis and so that more funds and resources are devoted to the research. And more so now, with the circumstances of the Covid-19 pandemic, which have caused the cancellation of many events and fundraising activities.

As the families and their children explain in the video in their own language, Ataxia Telangiectasia is a rare, genetic and neurodegenerative disease that still has no cure and causes significant progressive disability. Those affected normally require the use of a wheelchair towards the age of 9 and the condition also causes immunodeficiency, pulmonary complications and an increased risk of developing tumours.

In addition to being a rare disease, it is difficult to pronounce, meaning journalists, friends and the families themselves regularly refer to the condition as “A-T”,  “rare disease” (and there are more than 7,000),  or “Ataxia” (and there are over 300 types). If the condition is not well known, diagnosis is more difficult, less research is carried out and it will take longer to improve the quality of life…

With this video, A-T families call for everyone to support their cause by recording their own video in which they say:

Ataxia Telangiectasia may be hard to pronounce but it’s even harder to live with… Please take on the Ataxia Telangiectasia challenge to raise awareness for this rare genetic condition and help us find a cure or treatment sooner”

And then share on social media stating “We challenge you to repeat this message in your own video clip and encourage others to do the same, to help raise awareness for #AtaxiaTelangiectasia and @ActionforAT. Visit to learn more about the condition and the families who look to us for hope.

Please watch this short and powerful film, share it with your friends and record your own version asking others to get involved.