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Ataxia Support Network

Ataxia Conference Las Vegas 2018/Dr. Susan Perlman

#1

Did anyone see the information on the 2019 Ataxia Conference in Las Vegas? Dr. Susan Perlman from the Ataxia Clinic at UCLA is the keynote speaker . She stated that there could be a new drug in 2019 for ataxia. Somethings to help with
symptoms and slow progression. I’m skeptic. Why give us false hope?

I think gene editing would be the only jope. Check out Gladstone Institute website in California. Interesting research going on there.

Regards,
Piper

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#2

Please excuse the typos

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#3

Could you give us a link to research on ataxia by Dr. Susan Perlman?

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#4

I saw the information about the conference on ataxia.org. I don’t have information about her research but know she is at UCLA.
I need to check it out myself.

Piper

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#5

It may be she is speaking of Vatiquinone:

https://medkoo.com/products/7862

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#6

Very, very preliminary reading of the information surrounding EPI-743 makes me angry once again at the pharma industry. EPI-743 is a fancy anti-oxidant based on a man made form of vitamin E. It doesn’t act on the pathology of neurological disorders, it simply improves cellular survival, but that is something that a dozen supplements do possibly just as well or better, but they will never get a clinical trial because you can’t charge tens of thousands of dollars for them.

I hope I’m wrong about this.

In any case, people should know that IF and I am guessing here, but IF Dr. Perlman is talking about EPI-743 it is designed to slow progression. It is NOT in any form a cure. Again, I could be way off base.

I sent an email so we should see later this week what she’s talking about.

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#7

Wouldn’t it be nice if they ran a study comparing the $100,000 drug against this similar vitamin:

Vatiquinone
vatiquinone

Vitamin E
vitamin%20E

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#8

Check out:

www.pharmajournalist.com/pharma-news.
I apologize if link doesn’t work. Just.chceck out pharmajournalist. com. There is info there regarding SCA and a new drug, CAD 1883.

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#9

CAD-1883 is another drug designed to improve cellular function, but as with the Vatiquinone, it does not act on the underlying cause of any neurological disease.
I guess something is better than nothing . . .

https://saniona.com/pipeline/cad-1883/

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#10

I agree. Something is better than nothing although getting to the root cause is my preference. Perhaps (and this is a big, unsure perhaps), it could help us until gene editing is taking place. ALS, Huntington’s Disease, Sickle Cell, Marie Charquots (sp) are among the first to be studied on the Gladstone Institute pipeline.

I talked to Dr. Bruce Conklin who is a Senior Investigator there and he said SCA’s could be in the next targets. Unfortunately, we all know this could take years.

Thanks for sharing the information. I’m technically challenged and have difficulty with that.

Kind regards,
Piper

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#11

Opinions and skepticism really have no bearing on facts…

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#12

Thanks for the reminder.

Piper

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#13

I’m going to see Dr Perlman next week at UCLA. I’ll ask her about this. I don’t expect to see a cure in my lifetime but gladly accept anything that will slow progression and improve the quality of the time I have left.

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#14

Agree. Thanks Mary. Please let us know what you find out from Dr. Perlman.

Piper

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