#IAAD post Putting your Heart into Twitter with Alan Thomas at Doctors 2.0 & You 2014 #doctors20

Putting your Heart into Twitter with Alan Thomas at Doctors 2.0 & You 2014 #doctors20 #IAAD #digitalhealth

Alan Thomas is a most remarkable man. He is an Ataxia awareness advocate, and a member of the Movement for Hope. He is in fact “hope personified” when you get the opportunity to have a moment with him and you can’t but smile. He sent us a text in honor of the upcoming Sept 25 International Ataxia Awareness Day. But, first, a quick introduction.

In his own words, he’d always walked with a “wobble” and spoke with a “slur” until one day, he realized that, if spreading butter on his sandwich was getting to be a task, then he’d better see what the doctor would say. Unfortunately, the first gp he saw sent him home to rest…. But, many years and tests later, specialists came up with the right diagnosis, Ataxia, a severe neurological condition.

There was so little visibility for this disease, that Alan set to work on the subject and became “Trustee of Ataxia UK (the national Ataxia Charity) and chairman of Ataxia South Wales”. InfluencersByTweets

While he works tirelessly and endlessly at his computer to improve the support available for patients , Alan was able to come and attend Doctors 2.0 & You. And participate he did. Alan was the most active Tweeter present at the event when we looked at the scores, thanks to data calculations from Symplur . So, here you see Alan seated on stage when we called him up to announce his award. The piechart to the right shows the top influencers. Click for a larger version.

BlueTweetAlanThomasOn the left, please click and enlarge the photo of the Twitter board at Doctors 2.0 & You which Alan also wants you to see.

Next, below is Alan’s text.

Alan Thomas @alanROYGBIV Ataxia South Wales chairman / Raredisease “Warrior”

I am very keen to promote Patient Engagement in to ALL issues regarding the well-being of patients.

As a patient of a “Life-Limiting” raredisease, I can convey this message from my point of view.

Already known in the Raredisease community as” The Raredisease Warrior” for the continued campaigning, at many levels from patient forums, local and regional Health boards and Welsh/UK government organizations., as well as taking part in many Global conferences, in person or via the internet.

‘Ataxia’ means ‘lack of order’. People with ataxia have problems with movement, balance, and speech. It is a “Degenerative” (in my case, it is a very slow degeneration) there is currently no cure for this “Life-Limiting”, Neurological, condition.

Doctors 2.0 & you, Paris, June 2014

Doctors = Yes, I see them !

2.0 = Yes, I use the web + Social Media ! Alan Thomas and Denise Silber

You = Me !

= Patient Engagement

When I first looked at attending Doctors 2.0 & You conference, I was a bit nervous, seeing the event venue was pretty old – I am a wheelchair user so access to buildings is an issue I need to look at. It was OK. Plus (as I found out) and delegates at the event where only to happy to help. The venue was very impressive with the event held on three floors

The “Range” of attendees at the event was especially good,( from all over Europe and worldwide and Wales (me), all with an interest in the future of Social Media / electronic communications & innovation within the health community.

The NETWORKING was also good, with patients and pharma talking to each other ! = Patient Engagement

(Friendships and contacts that will have good memories).

It was good to see the Patients conversations where listened to, and welcomed by other attendees.

The amount of “Live” Tweeting was excellent – meaning the event could be followed by non-attendees = Patient engagement.

I look forward to returning to Doctors 2.0 & You to continue the conversation and friendships.

Alan Thomas @alanROYGBIV Raredisease “Warrior” Wales

Ps International Ataxia Awareness Day 25th September: Global events will be held to mark the day #IAAD


Hi Allen, this was a great article! Thank you for posting it here so we all can see this too! I love seeing you and your wife's photo there! I am so impressed with all that you do for Ataxia. Keep going strong there!!!! And hopefully I'll see ya again at the NAF Conference in Denver this March 6-8 2015 :-)

Thank you for your dedication, Alan!

Sir Alan of Wales a true hero

Well said, Punk! Alan is a true hero!

What a wonderful work you are doing, Alan! I admire you! The world needs more people like you!