Rare Disease Awareness with Alan Thomas Founder of Ataxia & Me
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.
International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. #IAAD
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.
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.
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 !)
TeamAtaxia (English)- TîmAtaxia (Welsh) is a successful team name for fundraising projects and events,(on-line this year, due to Covid) 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.
Follow their “Mission” at www.ataxia-and-me.org and via their Social Media Channels:
Facebook @ataxia and me
All images were provided by Alan Thomas himself with exception to the photos of me wearing the Ataxia and Me facemask
Many thanks for reading, please can you share to help us raise awareness of this condition.
If you would like to show your support PLEASE #donate via their #fundraising page
Ataxia and Me are a patient focused Charitable Incorporated Organisation (CIO) 1184030, based in Wales with a Global following. We are very positive, and have a good outlook, with the saying “patients helping patients”
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 Variant V1
Ataxia with Vitamin E Deficiency
NORD – National Organization for Rare Disorders