Hi all, how great is the awareness surrounding Motor Neurone Disease at the moment and the publicity in the media. The £50 million pounds that the government is giving to research is just wonderful.
It is so well deserved but if only Ataxia Awareness could have a just a fraction of this it would mean so much to many of us.
Best wishes to everyone.
It is great to hear all the funding happening for MND, however it has got a high profile due to Rob Burrow and Doddie Weir being diagnosed with it. Ataxia will not become that well-known because no-one famous has got it. I don't wish it on anyone, but that is the only way for it to happen.
it's unfortunate, but even medical professionals i've encountered didn't know what ataxia is. Tiggywinkles , it sucks, but you're right. if someone famous comes down with it, people will start to pay attention.
It’s seems that a famous person needs to suffer a rare/ unknown disorder before huge publicity is given, certainly wouldn’t want anyone to suffer like we all are but the awareness would certainly be welcomed 👍
I thought the Emmerdale star would help but it really didn't as he had a different diagnosis for which ataxia was a symptom.
I so agree with all of you on here, we need someone famous to get ataxia but of course I don't wish this on anyone.Michael J Fox has brought Parkinsons to awareness.
MND managing to get £50 million funding for research is another big step forward!
I so agree with everything written in this discussion
The answer is for one of us to become famous!Ataxia is so often a symptom of other apparently more serious conditions, such as Parkinsons, MS, even MND. Sufficiently rare by itself to confuse many people who don’t have it. And of course sufficiently serious to confuse those of us who do have it. 🥴
Nigel (soon to be famous, but already notorious as the frog man of Totton)
Nigel I will follow your path to fame with great interest! 👍
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