Empowering the Patient
Ataxia is a Greek word for “Lack of Order”. Our mission is to bring some order with Ataxia awareness.
As part of the Ataxia Aware project, we are sharing personal accounts of those with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
How it all began:
A short while, after Diagnosis (Read Here), it became obvious there was not a lot of “patient based” “lived experience” information directly available. I decided to advocate for myself, and share the information, to the rare disease community. I did this for many years, along the way many people told me to do this as a charity itself. After this message was coming from patients and the pharmaceutical industry, it became more of an idea to think about.
A chance meeting with a friend (who happened to work for the BBC) told me to “go for it” with the saying “patients helping patients” and “stronger together” with the mission being to return some order to the lack of order. It was time to bite the bullet – the kitchen table idea had begun.
Help from many sources, to set up a charity – from a local Voluntary services Association, a mentor, gathering trustees, charity commission and a bank. Plus many more entered the “to-do” list. The charity Ataxia and me (1184030) was launched at a Medical LifeScience event in Wales, to a global audience.
The Next Phase:
This positive momentum continued, taking the charity to engage with many other events around Wales, UK, Europe and the US, with many Display stands and speaking opportunities . As this positive (and worldwide) momentum increased, it made sense to update to a new look.
With digital input from our team (Me, Tony and Aneurin), we made the change a reality
Ataxia-and -me.org > Ataxia-aware.org
This encountered a few challenges (including a few days on website hosting support chat help!) and many emails to allow the change to www.ataxia-aware.org. A patient focused charity (1184030) to support patients and all affected by this life limiting condition of the Cerebellum. With a focus on Ataxia, and, also, including associated rare disease and movement disorders. We also share any information that will be of interest to patient and pharma in respect of their relevant health condition.
Ataxia means ‘lack of order’. People with ataxia have problems with movement, balance and speech.
“Empowering the patient, to live to the full”
Stronger Together
Ataxia -aware.org is based in Rural Wales with a Global impact.
About Alan:
“Alan Thomas is a patient engagement advocate for rare diseases in general 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 in all issues regarding the wellbeing of patients.
Alan has established a patient-driven and focused patient charity and campaigns at many levels, including patient forums, local and regional health boards, Welsh/UK government organisations, as well as taking part in many global conferences, in person or via the internet.”
I am Ataxia aware !!! and the Adventure continues……………
Follow us at www.ataxia-aware.org
And on Social Media @ataxia_aware
Written by: Alan Thomas
Edited by: Aneurin Read
If you would also like to get involved and share your experience with Ataxia or another rare condition, please get in contact with us through our social media channels or our email.