Has anyone investigated USA Federal info or other national research on ataxia? Or entered in govt trials? Neta

[neta]

[HarryB Administrator]

Hi Neta

Ataxia UK keeps abreast of research into ataxia all over the world. The Ataxia charities throughout the world communicate with each other to and frequently co-fund on projects to ensure a project is not repeated in different parts of the world and to ensure the pot of money available for ataxia research goes as far as possible. This includes the two ataxia charities in the USA, NAF and FARA.

There are at least 60 types of ataxia known (and counting) and as I am sure you will appreciate finding treatments and a cure for any one of them is a very expensive, time-consuming and extremely lengthy process in such a complicated group of disorders.

Best Wishes

Harriet

[neta in reply to HarryB]

Dear Harriet,

Thanks again for your lengthy reply. I hope a cure comes soon for all concerned. I just feel that ataxians are shuttered off to the sidelines while "famous" diseases such as breast cancer and AIDs etc, get al the attention and money. I shouldn't complain so much because my CA is still manageable and I have good care... but still I feel it remains unknown and secretive and a cure per se is elusive in a world where there are so many breakthroughs and technological advancements..

Despite everything, have a swell weekend, Shalom. Neta