Happy International Ataxia Awareness Day!

[HarryB]

Dear all

I am sure you know that today (25th September) is international ataxia awareness day. What did you do to help spread the awareness about ataxia? I haven't left my flat all day but I have put something on my Facebook page...

Harriet

[Tiggywinkles]

I put it on my Facebook too!

[wobelyjohn]

I was very surprised that ataxia UK didn't send a prepared thing on FB that could be just shared wake them up please.

[HarryB Administrator]

Hi wobelyjohn

There were suggestions on the Ataxia UK website of how you could've raised awareness yesterday.

I put a link to the website on my Facebook wall. There are also videos on YouTube you could've used.

There was a very good piece on the by website that Sue Millman, CEO, had contributed to. home.bt.com/lifestyle/wellb...

You may like to put this on your Facebook page.

Best Wishes

Harriet

[wobelyjohn in reply to HarryB]

Obverse it wasn't prominent enough for me to see as I couldn't find it when I looked

[Cally151090]

I wrote a post on facebook. Just explaining what ataxia is. Anything to raise awareness xx

[neta]

Not sure "spreading the word" is an obligation of patients. Arent there big orgs. and big bucks for this? Can't they hire a p.r.person? That might do more than a Facebook posting. Didnt see "atatxia" mentioned at all in any media or by any celeb.

[HarryB Administrator in reply to neta]

Hi neta

I have 400+ Facebook friends and so I was able to reach a lot of people to direct them to the Ataxia UK website. In addition to this various people shared my link so all of their Facebook friends saw it. And so on... If just one person learns what ataxia is through my intervention, then it has been a success.

Facebook is a very quick, cheap and effective way of spreading awareness. Although patients are not 'obliged' to raise awareness, there are a lot more patients with ataxia than there are big organisations and we can obviously be more effective in larger numbers.

Harriet

[neta]

Yes. I agree, Harriet. FB can be effective. Look at the Arab Spring. It can galvanize many. Nevertheless, one media article or news segment on TV, can reach millions. I (mistakenly) assumed that Ataxia UK and NAF were large orgs.,

But thanks for responding! Best, N