Media

[tedjohnson]

Hi everyone (again)

Thanks to everyone for taking the trouble to contribute to my letter. It's very reassuring that we all feel the same that the condition Ataxia should be generally recognised as is Parkinson, MS. ME

and other such 'illnesses' and yet still the medical profession does not always know what Ataxia is

We all know that a cure is a long way off but this website does really help us talk about Ataxia and share our views and ideas

Keep smiling😄😃😀😎😛😜. Ted

[neta]

Not good enough. A cure should not be so way off. It was off many years ago. Where is everyone? Anyone? I keep reading about "dramatic advances" but the drs. just look at me blankly. There seems to be a huge disconnect between these discoveries and reality. N

[february]

Dear Ted, Yes, I so wish ataxia's were recognized like many other neurological diseases! Honestly, when I was diagnosed with ataxia twelve years ago, I had never heard of it either! ;o)

[cymruralf]

Hi Ted and all others

I like most of us had never heard of this condition until it started too affect me. We must stay positive about a cure or medication being discovered otherwise we have no hope.

Perhaps we all should do more to publicise these conditions by e mailing MPs, Newspapers, medical companies and news companies (Television) etc I bet 90% of them have never heard of these conditions.

We could share the e mail addresses and contacts. I am not advocating mass protest or chaining ourselves up but the power of persuasion and enlightening the public to these conditions.

Your thoughts

[jneilw51 in reply to cymruralf]

I agree with cymruralf. But, one problem that we have to expect to possibly encounter has to do with the fact that much of the research into potential treatments for Ataxia appears to be centered around stem cells. Right now, at least in the US, there is a huge debate around whether it is ethically right to allow the use of embryonic stem cells in research studies. Many people believe that allowing the purchase of embryonic stem cells encourages abortions, and even pregnancies for the purpose of selling the body parts of fetus's. We need to get public opinion behind our cause. But we must also be prepared to prolong our efforts if it turns out that we may be facing a much longer, and more complicated, task.