For the second in my series of ‘Are you aware of this #Rare?’ I will be helping my friend, fellow peer and patient advocate Alan Thomas raise awareness of Ataxia, a rare condition that he lives with himself.

We met through the conference circuit at eyeforpharma events, now known as Reuters Events Pharma, and instantly had common ground when it came to changing the mindset of pharma, doing what we could could to better the medical healthcare industry to create better outcomes for patients. I am of course talking about improving patient engagement, and spreading the message that people should speak to the patients and not at them as well as raising the voices of those who couldn’t do it for themselves.

We now work in ‘cahoots’ with each other to help each other as Founders of Patient Organisations, afterall advocacy work is frequently easier when as groups we join forces to assist each other. Not only that, our voices travel further to help raise disease awareness and educate about the chronic and rare conditions, current issues affecting patients, research and drug development.

Alan provides us with some information about Ataxia, his charity Ataxia and Me, and International Ataxia Awareness Day (IAAD) on 25th September.

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

Ataxia is a Greek word meaning “Lack of Order”…

our  Mission is to “bring back some order, to the lack of order”

For more in-depth health information please check out the website and the health websites given at the end of the article.

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

During the, month of September saw an immense number of Social Media interactions, with 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.

Twitter @ataxia_and_me

Facebook  @ataxia and me

Instagram  @ataxia_and_me

All images were provided by Alan Thomas himself with exception to the photos of me wearing the Ataxia and Me facemask

Places to find reliable information about Ataxia

NHS – https://www.nhs.uk/conditions/ataxia/

NHS 111 Wales – https://111.wales.nhs.uk/encyclopaedia/a/article/ataxia

Mayo Clinic – https://www.mayoclinic.org/diseases-conditions/ataxia/symptoms-causes/syc-20355652

The Johns Hopkins Medicine – Neurology and Neurosurgery – https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/ataxia/conditions/

Global Genes – Allies in Rare Disease

Ataxia Telangiectasia

Ataxia Telangiectasia Variant V1

Ataxia with Vitamin E Deficiency

Ataxia-telangiectasia syndrome

Ataxia-telangiectasia-like disorder

NORD – National Organization for Rare Disorders

Ataxia Telangiectasia

Ataxia with Vitamin E Deficiency