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Ataxia UK
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Treatment for Huntingdon 's

There has been a breakthrough in the treatment of Huntingdon ' s. They think it could work for other neurodegenerative diseases..If you go on the BBC website you should be able to find it. Donna x

Sorry I couldn't send the link.

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Anyone wanting the link mentioned by Don21 about Huntinsons disease can find it on the BBC news app.

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Cant find it N

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Hi Neta, Litty's link(see below)

It should work . If not we'll try again

Donna

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Thanks it does...thanx again, x n ps sounds good but slow no?

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Neta I was so happy when I read it that I didn't take time to read the details. You're right it is years away.

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indeed,, Whenever I broach these new discoveries with my neurologists, they look at me as if I landed from the Moon. In general,, I don't trust the general media just partially. They want headlines. I tend to trust he BBC but ... xx N

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I was just reading about that too....sounds really promising....lets hope Ataxia is already being considered as one of the other possible diseases this treatment could be used for!

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Sounds v hopeful. HOPEFULLY LINK bbc.co.uk/news/health-42308341 X

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It would be great if it would help with other neuro-degenerative diseases, such as PD. Can we but have a sliver of hope that this might work for us?

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Saw it last night a glimmer hope :)

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There are several companies in various stages of clinical trials testing various gene silencing drugs and no doubt it will be applicable to many forms of ataxia, but there are 2 problems. First, the companies are planning on charging upwards of $750,000 per year per patient for the treatments, and second the technique requires companies to develop unique molecules for each neurological disorder so the rarer the disease the less likely the companies are to be interested in developing a molecule as the return on their investment will be low.

The upside is that there are many companies and many variations in gene silencing being tested so ultimately competition should speed up innovation and help reduce costs. I continue to believe that my children will see an affordable "cure" for ataxia and similar disorders.

hbr.org/2017/04/the-cost-of...

vimeo.com/241107004

ionispharma.com/

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Hi all,

for anyone wanting more information about how this news relates to ataxia, I encourage you to visit the latest research news section of the Ataxia UK website.

ataxia.org.uk/Blogs/latest-...

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