It’s great to hear such positive news 
xB
Hi Beryl. I love reading your posts. You are such a positive person. You always have kind words and very encouraging. Maybe the medicine that Brooke is on can help others with ataxia. I feel so blessed she is in this study. Going from “you are going to be in a wheel chair” to “your brain can heal” is such a miracle. The meds need to be approved soon. 
Hi Cynthia,
I am really pleased to hear of your Daughters improvement - I can sense in your posts you are very optimistic with this trial. Lets hope 2018 provides us with good news on treatments for Ataxia, something previous years havent provided.
I was diagnosed with SCA6 10 years ago & the last year things have got worse, life has certainly changed - but I am able to cope.
Good luck to everyone for 2018 & fingers crossed.
Regards Dave
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I forgot to add that I am not on the trial - but am living in hope.
Take care all
I meet up regularly with others coping with ataxia Dave, and realise that the degree in symptoms with SCA6 can vary enormously. It’s good to know how well you’re coping xB
Will this drug help Friedrich 's ataxia
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Currently, there isn’t any proof that Riluzole or Trigriluzole will definitely benefit FA. Here in the U.K. Riluzole is approved for ALS and MND but Neurologists may be willing to prescribe it for Ataxia. Trigriluzole is still undergoing trials in the U.S. Speak to your Neurologist for further advice on being prescribed Riluzole for FA 
xB
Thank you Beryl I will ask my sons neurologist
Hi Chuck,
I have been on BHV-41578 for almost 40 weeks with no improvements to report. The pill does not have any effect on me. At this rate, I am looking at a wheelchair very soon.
So far, there seems to be divided opinions about BHV 4157. I’ve just looked at a recent link, as far as I could tell the findings will be published sometime in 2018. I’ve never been involved in a Clinical Trial, so it was a surprise to read about the criteria/inclusions/exclusions etc that can apply.
But, I did at one time take part in a Study into the benefits of taking Turmeric. I was given ‘the real thing’ and not the placebo, after reading good reviews, I had high hopes At the end of the Study, blood and urine were tested by a medical team, to ensure participants had actually kept to the ‘prescribed dose’. It turned out that Turmeric is better absorbed into the body when it’s used in cooking 
It was purgatory for me, I don’t like the taste of Turmeric and I’d had to consume at least a teaspoonful per day 
xB
Hi Beryl_Park,
Yep, not to optimistic. Check out what Biohaven had to say about BHV-4157.http://files.constantcontact.com/42a1c4a9001/85a57c28-b053-485c-921d-42cd551c21f9.pdf
I know many people placed a lot of faith in this drug. Some (not in this group) were actually under the impression that it was a cure. But, for those who already take Riluzole, perhaps it may be prescribed as being less toxic to the Liver xB
I know, that was why I had a blood test done. Thank goodness it can back borderline. I do not trust these pharmaceutical companies.
Hi Henry. This article is from the first phase from October 2017. The study continues. It is helping my daughter and if this is the only meds available I will make sure she continues these. She does not fall as much and her speech is clearly better. She continues to improve daily. I know it is not a cure but it seems to be stopping her progression. That is all I can hope for. I still hope they approve it because that is all that we have. There is still so many questions on this med. why does it help some people. Maybe they need to up the dose for others. When I go to UCLA I ask those questions. Male vs Female, physical activity, diet and so on. At least we are helping them find answers and the patients participating have great purpose in helping others find answers. Thank you Henry for your participation.
Hi Cynthia,
Really glad to hear your Daughter is showing good signs - I will be attending the Ataxia conference & hopefully get some info regarding this trial.
All the best Dave
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Hi Cyntha,
Yes, I too am glad she is progressing and will also be attending the Ataxia conference in Philly. Hope to hear from all the “experts” and report back.
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See you in Philly
(I will be the one in a wheelchair / Scooter
Oh and from Wales)
Stop and say Hello
Alan
Hi Alan, will do. I am with the red Drive walker.