# I received that E-mail from NAF **URL:** \ **Category:** General\ **Tags:** stories\ **Created:** [December 9, 2019, 2:24am UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756 "2019-12-09T02:24:05Z")\ **Posts on this page:** 19\ **Page:** 1
**Author:** ![eunseo1](https://avatars.discourse-cdn.com/v4/letter/e/cc9497/32.png) [@eunseo1](https://forum.livingwithataxia.org/u/eunseo1)\ **Post date:** [December 9, 2019, 2:24am UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/1 "2019-12-09T02:24:05Z")
![dd](https://canada1.discourse-cdn.com/flex027/uploads/ben_ataxia/original/2X/2/2e3df9db9203478da4d97372f08fac2ae112f2c9.jpeg) It was supposed to end soon but recruiting! and especially for SCA 2 ??? I hope it can be a hope and want to get quick result.\ ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [December 10, 2019, 10:42am UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/2 "2019-12-10T10:42:48Z")
🤔 If you search for the trial, and look down below ‘recruitment’, there’s a link to ‘expanded access’ which gives some information. Otherwise you could contact the trial organisers direct for information. | Study Type : | Interventional (Clinical Trial) | | --- | --- | | Estimated Enrollment : | 210 participants | | Allocation: | Randomized | | Intervention Model: | Parallel Assignment | | Masking: | Triple (Participant, Care Provider, Investigator) | | Primary Purpose: | Treatment | | Official Title: | A Phase III, Long-Term, Randomized, Double-blind, Placebo-controlled Trial of Troriluzole in Adult Subjects With Spinocerebellar Ataxia. | | Actual Study Start Date : | March 8, 2019 | | Estimated Primary Completion Date : | October 31, 2020 | | Estimated Study Completion Date : | October 31, 2020 | ---
**Author:** ![Shoaib](https://avatars.discourse-cdn.com/v4/letter/s/c5a1d2/32.png) [@Shoaib](https://forum.livingwithataxia.org/u/Shoaib)\ **Post date:** [December 10, 2019, 1:07pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/3 "2019-12-10T13:07:14Z")
Biohaven is expanding it’s study for 1 more year to show that Trigriluzole can slow the progression of SCA ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [December 10, 2019, 4:59pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/4 "2019-12-10T16:59:47Z")
🤔They expanded the trial for Troriluzole (formerly known as Trigriluzole) to include several types of SCA. ---
**Author:** ![eunseo1](https://avatars.discourse-cdn.com/v4/letter/e/cc9497/32.png) [@eunseo1](https://forum.livingwithataxia.org/u/eunseo1)\ **Post date:** [December 10, 2019, 11:50pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/5 "2019-12-10T23:50:31Z")
disappointing!! ㅜ.ㅜ Quickly! ---
**Author:** ![ataxiabr](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/ataxiabr/32/1826_2.png) [@ataxiabr](https://forum.livingwithataxia.org/u/ataxiabr)\ **Post date:** [December 14, 2019, 4:52pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/6 "2019-12-14T16:52:34Z")
Where can I apply? Thanks ---
**Author:** ![Shoaib](https://avatars.discourse-cdn.com/v4/letter/s/c5a1d2/32.png) [@Shoaib](https://forum.livingwithataxia.org/u/Shoaib)\ **Post date:** [December 15, 2019, 2:04pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/7 "2019-12-15T14:04:32Z")
> **[Spinocerebellar Ataxia Study | Biohaven Pharmaceuticals](https://www.scatrial.org/)** > > Have you or a loved one been diagnosed with Spinocerebellar Ataxia (SCA)? If so, you could help Biohaven Pharmaceuticals learn about a new investigational medication being tested in people with SCA. See if you qualify. ---
**Author:** ![Mellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/mellie/32/5081_2.png) [@Mellie](https://forum.livingwithataxia.org/u/Mellie)\ **Post date:** [December 16, 2019, 12:55pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/8 "2019-12-16T12:55:42Z")
What’s disappointing? ---
**Author:** ![Mellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/mellie/32/5081_2.png) [@Mellie](https://forum.livingwithataxia.org/u/Mellie)\ **Post date:** [December 16, 2019, 12:56pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/9 "2019-12-16T12:56:56Z")
Any UK residents applying? ---
**Author:** ![eunseo1](https://avatars.discourse-cdn.com/v4/letter/e/cc9497/32.png) [@eunseo1](https://forum.livingwithataxia.org/u/eunseo1)\ **Post date:** [December 17, 2019, 7:30am UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/10 "2019-12-17T07:30:26Z")
slower than I thought ---
**Author:** ![Mellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/mellie/32/5081_2.png) [@Mellie](https://forum.livingwithataxia.org/u/Mellie)\ **Post date:** [December 17, 2019, 7:59am UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/11 "2019-12-17T07:59:21Z")
Yes. It got me all excited there. I was even feeling better for a moment. ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [December 17, 2019, 11:48am UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/12 "2019-12-17T11:48:17Z")
😏 Someone on healthunlocked received this reply…so we’ll just have to wait until there are UK studies. ‘This study does accept international applicants - however, it also requires each participant be able to attend every study visit in person. There are 17 in-person visits total over a 24 month period. Is this feasible for you?’ ---
**Author:** ![Mellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/mellie/32/5081_2.png) [@Mellie](https://forum.livingwithataxia.org/u/Mellie)\ **Post date:** [December 17, 2019, 1:11pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/13 "2019-12-17T13:11:35Z")
I had the feeling it would be the case. We’ll just have to cross fingers and hope for the best. ---
**Author:** ![Shoaib](https://avatars.discourse-cdn.com/v4/letter/s/c5a1d2/32.png) [@Shoaib](https://forum.livingwithataxia.org/u/Shoaib)\ **Post date:** [December 17, 2019, 1:38pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/14 "2019-12-17T13:38:58Z")
I had been with the same drug for almost 2 years. My last visit is on January 6th, 2020 They just extended the study for 1 more year to show that Trigriluzole (BHV-4157) slows the progression of the disease. Although I have not seen any difference, statistical analysis shows it may slow down the progression. Since I live in Norfolk, VA and Biohaven is paying for me and my wife’s flight and stay 1 night in Baltimore, MD, I have accepted the offer. It allows me to see my neurologist at Johns Hopkins and allow me to stay abreast of the disease. I am not too excited about Trigriluzole. So you are not missing anything by not being in the study. ---
**Author:** ![Mellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/mellie/32/5081_2.png) [@Mellie](https://forum.livingwithataxia.org/u/Mellie)\ **Post date:** [December 17, 2019, 5:25pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/15 "2019-12-17T17:25:21Z")
You’re not too excited you say, but don’t you think you are on the placebo? … maybe? ---
**Author:** ![Shoaib](https://avatars.discourse-cdn.com/v4/letter/s/c5a1d2/32.png) [@Shoaib](https://forum.livingwithataxia.org/u/Shoaib)\ **Post date:** [December 17, 2019, 5:46pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/16 "2019-12-17T17:46:18Z")
I think I might had been on the placebo first 3 months. It had been 2 years now. The randomization ended after the first few months. I am on the real thing for more then a year. I have not seen any noticeable changes. ---
**Author:** ![Mellie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/mellie/32/5081_2.png) [@Mellie](https://forum.livingwithataxia.org/u/Mellie)\ **Post date:** [December 17, 2019, 10:43pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/17 "2019-12-17T22:43:36Z")
I’m really sorry to hear that. So, it doesn’t work for everybody? you’re still feeling a progression? ---
**Author:** ![Beryl\_Park](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/beryl_park/32/5716_2.png) [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Post date:** [December 18, 2019, 9:43am UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/19 "2019-12-18T09:43:33Z")
🤔 I’m just wondering. Will you stay in the study when the formulation changes to Troriluzole. ---
**Author:** ![Shoaib](https://avatars.discourse-cdn.com/v4/letter/s/c5a1d2/32.png) [@Shoaib](https://forum.livingwithataxia.org/u/Shoaib)\ **Post date:** [December 18, 2019, 1:49pm UTC](https://forum.livingwithataxia.org/t/i-received-that-e-mail-from-naf/7756/20 "2019-12-18T13:49:35Z")
To my knowledge, the formulation of Trigriluzole and Troriluzole are the same. It is the the prodrug for Riluzole. BHV-4157 is a prodrug formulation of [riluzole](https://www.alzforum.org/therapeutics/riluzole), a medication used to treat amyotrophic lateral sclerosis. Following oral administration, aminopeptidases in the blood release riluzole from a tripeptide carrier. Unlike riluzole, which must be taken twice a day on an empty stomach, this prodrug requires only once-daily dosing and is unaffected by food. Riluzole inhibits voltage-dependent sodium channels and reduces synaptic glutamate by increasing its uptake and inhibiting its release. Glutamate dysfunction is a feature of Alzheimer’s disease. Studies in AD mouse models indicate protection from AD-related pathology and cognitive dysfunction by riluzole ([Okamoto et al., 2018](https://www.alzforum.org/papers/riluzole-reduces-amyloid-beta-pathology-improves-memory-and-restores-gene-expression-changes); [Hunsberger et al., 2015](https://www.alzforum.org/papers/riluzole-rescues-glutamate-alterations-cognitive-deficits-and-tau-pathology-associated-p301l)). In rats, riluzole was reported to prevent age-related changes in gene expression similar to those seen in AD ([Pereira et al., 2017](https://www.alzforum.org/papers/age-and-alzheimers-disease-gene-expression-profiles-reversed-glutamate-modulator-riluzole)). And yes, I plan to continue with the study.