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Ataxia Support

New Orphan Drug Designation for Potential Spinocerebellar Ataxia Treatment

New Orphan Drug Designation for Potential Spinocerebellar Ataxia Treatment

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Great news thanks. I can’t wait to see what it does and where it will be available. If it has approval I’m thinking a few months before it gets tested. Either way it’s a forward step. Are you taking any vitamins and or supplements for your Ataxia? Thanks for sharing

You can buy it now over the counter. They have a patent on an “improved”/“manmade” version of a supplement already known to be helpful for some neurological disorders. The first link below is to the company website. You need to click on the “mode of action” icon to see the relevant information.

http://intrabio.com/for-medical-professionals/

it is important that people understand what this molecule is potentially doing. First, the researchers honestly don’t know. Second, the best guess right now is that this molecule is somehow involved in neuronal communication. What that means is that this is something that can alleviate symptoms, but is not fixing any of the underlying problems that are at the root cause of the disease.

Lastly there is another amino acid which I believe has greater evidence of potential to help, but is being ignored because it’s another molecule that can’t be patented and sold by a pharmacy:

https://healthunlocked.com/ataxia-uk/posts/137720657/todays-interesting-molecule.-taurine.

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I for one will be keeping a watchful eye on this development. But I should mention that some discussion has taken place regarding this potential treatment on this site.

:thinking: May ‘15 might have been the last time it was discussed. :slightly_smiling_face:xB

I imagine that u r referring to Biohaven drugs. Are they serious people ???

My wife has started on the third test of BHV-4157 which is from Biohaven with Barrows Neug. instit. here in Az. People has said it take 6-12 weeks to show any improvement with this drug.

What dose is she taking? I am on 140mg a day. BTW Biohaven stock went up by 11 points today.

:slightly_smiling_face: NAF in conjunction with Biohaven are appealing for volunteers to take part in a clinical trial re Troriluzole. There are approx 10 centres across the US.

there is 18 site across the us doing this test:
here is the site I have been watching ;

she is taking 140mg of it