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Ataxia Support Network

New drug approved for A-T

#1
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#2

L-Leucine (clinical trial IB 1001 - 203) recommended dose is 3x 500mg/day the experiment being conducted is trialing a higher dose according to body weight. This product has been on the market for years sold as a supplement specifically for body builders.
I am currently trialing this myself. I have consulted my physician (as all Should) I will post any results.
It was cheap to buy.
https://ca.iherb.com/pr/Source-Naturals-L-Leucine-500-mg-240-Capsules/19155?gclid=CjwKCAiAnsnjBRB6EiwATkM1XjvtR29SlmoaItmN17kWWth_imDDFDl_YabO06wx8cIaS4NphHBo9hoC8nkQAvD_BwE&gclsrc=aw.ds

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#3

Keep us posted. I wonder how L-leucine works in the brain.

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#4

:slightly_smiling_face: Yes, keep us posted. I hope you feel some benefit.

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#5

Is this the same as tanganil, for vertigo? thx for sharing, best wishes.

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#6

L-Leucine works primarily on the muscles, providing them with amino-acids which in turn translate into energy. Thus providing bodybuilders with an energy boost.
I think the hope is that L-Leucine will provide some relief of symptoms of some ataxias (A-T) through boosts of energy.
I don’t know if it will have any direct influence on the brain or not.
Little information is provided on Clinical Trials .com other than to investigate L-Leucine’s over all effects on humans.
As for L-Leucine’s chemical composition, it appears to be closely related to Tanganil. However, I am not a chemist or anything like that, so I’m not sure. I have questioned its similarities myself, and I plan to inquire about this at my next neurologist visit on April 11th. Hopefully she will have some answers.
I have been taking L-Leucine for about a week now, there are no significant effects to note.

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#7

Thanks. I am on BHV-4157 for 1 year. So I cannot take anything else. But keep us informed.

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#8

Thank you for sharing.

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#9

I think I took it years ago when I was body building
I think it was an Amino acid. I can’t remember. It’s been 30 years!! I never got bad for the last 7-8 years! I never thought about that!
It makes sense! I wasn’t that bad at all then! I was diagnosed 33 years ago!

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#10

Is Biohaven coming up with a new trial? I recently got a letter from CoRDS regarding this.

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#11

BIOHAVEN SCA Study Fact Sheet 2019MAR04 V11 D.pdf (1.3 MB)

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#12

This is the letter I got from CoRDS

Hello,

Per your participation in the CoRDS Registry, you have been identified as an individual that may be able to participate in a Phase III Clinical Trial of an investigational medication, Troriluzole, in Spinocerebellar Ataxia. The study will focus mainly on disease types SCA 1 and SCA 2 but will also include patients with SCA 3, SCA 6, SCA 7, SCA 8, and SCA 10. This is a 48-week long study. Study participant are randomized one-to-one to receive troriluzole or placebo. Participants who complete the 48-week study may be eligible to continue for an additional 48-week phase where all participants will troriluzole.

Information on this research opportunity is attached to this email.

For more information about this study and the contact information for clinical research site near you please visit www.clinicaltrials.gov, identifier: NCT03701399.

You are not obligated to participate in any research study/opportunity sent to you by CoRDS staff. Any participation in the attached study is entirely separate from the CORDS Registry.

Please feel free to contact CoRDS staff with any questions or concerns.

Kind Regards,

The CoRDS Team
Sanford Research
2301 E 60th Street N
Sioux Falls, SD 57104
Toll-free: (877) ■■■■

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#13

Confused as hell and frustrated! The study was to end 1/19. Now,??? Can someone explain this to me!

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#14

I asked my neurologist at Johns Hopkins, and this is what they replied:

In regards to the CoRDS Registry, you are correct. It is another phase of the Biohaven clinical trial. The design of the trial is much of the same as the trial you are currently enrolled however, the difference lays in the total dosage amount given to patients. Unfortunately, since you are currently enrolled the Hopkins study, you are considered “ineligible” for the trial below.

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#15
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