International Ataxia Awareness Day: in conversation with Alan from Ataxia and Me

Alan Thomas is a patient advocate for rare diseases, and ataxia in particular. He is known as the ‘rare disease warrior’ and, as a patient with a life-limiting rare disease, he can convey the patient engagement message from his point of view on all issues regarding the wellbeing of patients.

Alan has established a patient-driven and focused charity, and campaigns at many levels, including patient forums, local and regional health boards and Welsh/UK government organizations, as well as taking part in many global conferences in person and via the Internet.

We caught up with Alan to find out more about Ataxia and Me, and Alan’s work as a patient advocate.

What made you start Ataxia and Me?

For many years I was communicating the ataxia rare disease experience at many health-related events and on numerous occasions I was told that I should do this in a charity setting.

After a while I took the plunge and established Ataxia and Me (charity number 1184030) – a charity founded by a patient with a very patient-focused outlook. We are based in rural west Wales, but have a global following. We have expanded our remit by including associated rare diseases and movement disorders, as well as the main topic of ataxia.

This wider remit has been welcomed not only by patients, who become empowered with a wider knowledge of their condition, but also by the medical, healthcare and pharmaceutical communities because they can communicate with a larger cohort in one conversation.

Why is International Ataxia Awareness Day important?

It is a day when the importance of the awareness of ataxia can be recognized. Ataxia and Me has lengthened this day to last throughout September, with the introduction of #AtaxiaAdvent. We have been sharing a fact about ataxia every day from 1 September, to make a total of 25 by International Ataxia Awareness Day on 25 September (and this year we have some extra animated images that have been added to the #AtaxiaAdvent collection). We also make sure that ataxia awareness is present throughout the year via our social media presence.

What have you found most rewarding about being a patient advocate?

I am very grateful that we are included in many platforms that promote patient advocacy from the viewpoint of ‘experts on their own conditions’ – the patients! Patient advocacy is something that is engrained in this charity. Knowing that we are helping (by empowering other patients) is a HUGE reward that we are proud of.

What is the biggest challenge of being a patient advocate?

A big challenge for many ‘kitchen table’ established groups is getting the word out there! A major concern for small organizations might also be the financial capacity of the group (the Elephant in the room!), as well as many other barriers such as travelling to events, care issues and health capacity.

What can everyone do to support ataxia awareness?

For International Ataxia Awareness Day, the general public can contribute or share posts on social media with the hashtags #IAAD, #AtaxiaAwareness or even #AtaxiaAdvent. This could be replicated by the pharmaceutical industry too – pharma could use the day to communicate any ataxia relevant information, including clinical trials, treatments or even a cure!

You can find out more about Alan and his work on his new website here: https://www.ataxia-and-me.org/

Alan talking to colleagues at the Oxford PharmaGenesis 20-year celebration in January 2018