# News, Research, and Clinical Trials **URL:** https://forum.livingwithataxia.org/c/general/news-research-and-clinical-trials/9.md [Latest](https://forum.livingwithataxia.org/latest.md) · [Categories](https://forum.livingwithataxia.org/categories.md) · [Tags](https://forum.livingwithataxia.org/tags.md) --- ## [About the News, Research, and Clinical Trials category](https://forum.livingwithataxia.org/t/about-the-news-research-and-clinical-trials-category/15)
**Author:** [@system](https://forum.livingwithataxia.org/u/system)\ **Replies:** 0\ **Last updated:** [May 30, 2016, 4:34pm UTC](https://forum.livingwithataxia.org/t/about-the-news-research-and-clinical-trials-category/15 "2016-05-30T16:34:17Z")
Information presented here may no be peer reviewed or authoritative, and should not be used as a basis for treatment recommendations. No endorsements by Ben's Friends are implied. --- ## [NAF Webinar…to discuss progress re TRORILUZOLE](https://forum.livingwithataxia.org/t/naf-webinar-to-discuss-progress-re-troriluzole/9125)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [November 18, 2024, 10:44am UTC](https://forum.livingwithataxia.org/t/naf-webinar-to-discuss-progress-re-troriluzole/9125 "2024-11-18T10:44:37Z")
TRORILUZOLE December 10 ………Zoom Webinar with the National Ataxia Foundation We have received lots of questions from our community about Troriluzole, an investigational therapy for SCA. In this session, we will go over… --- ## [FA and Omaveloxolone](https://forum.livingwithataxia.org/t/fa-and-omaveloxolone/8465)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 4\ **Last updated:** [June 25, 2024, 6:44pm UTC](https://forum.livingwithataxia.org/t/fa-and-omaveloxolone/8465 "2024-06-25T18:44:23Z")
Copied from www.ataxia.org.uk --- ## [Ataxia Webinars from NAF](https://forum.livingwithataxia.org/t/ataxia-webinars-from-naf/8953)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 0\ **Last updated:** [June 6, 2023, 9:20pm UTC](https://forum.livingwithataxia.org/t/ataxia-webinars-from-naf/8953 "2023-06-06T21:20:53Z")
--- ## [Found this on YouTube-worth watching](https://forum.livingwithataxia.org/t/found-this-on-youtube-worth-watching/8932)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 8\ **Last updated:** [April 20, 2023, 12:28am UTC](https://forum.livingwithataxia.org/t/found-this-on-youtube-worth-watching/8932 "2023-04-20T00:28:40Z")
These guys are online physical therapists . What Happened to Bob? Prayers! - YouTube Also this: How Can Bob Improve His Speech? - YouTube --- ## [SLS 005 Trehalose for ataxia](https://forum.livingwithataxia.org/t/sls-005-trehalose-for-ataxia/8782)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [August 3, 2022, 5:11pm UTC](https://forum.livingwithataxia.org/t/sls-005-trehalose-for-ataxia/8782 "2022-08-03T17:11:33Z")
SLS-005 contains the active ingredient trehalose, a low molecular weight disaccharide (0.342 kDa) that has been shown to penetrate muscle and cross the blood brain barrier On August 17, 2022 at 1 PM CDT, NAF is hosting … --- ## [SCA 2 research July 2022 (NeuroEPO)](https://forum.livingwithataxia.org/t/sca-2-research-july-2022-neuroepo/8777)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [July 31, 2022, 5:01pm UTC](https://forum.livingwithataxia.org/t/sca-2-research-july-2022-neuroepo/8777 "2022-07-31T17:01:34Z")
:slightly\_smiling\_face: Interesting news re SCA2 research NeuroEPO trial in people with SCA2 suggests a small clinical effect An early-phase clinical trial in people with Spinocerebellar Ataxia Type 2 (SCA2) has tested … --- ## [Useful h](https://forum.livingwithataxia.org/t/useful-h/8751)
**Author:** [@Issy](https://forum.livingwithataxia.org/u/Issy)\ **Replies:** 9\ **Last updated:** [July 18, 2022, 8:26am UTC](https://forum.livingwithataxia.org/t/useful-h/8751 "2022-07-18T08:26:26Z")
Continuing the discussion from The importance of exercise: Don’t know whether this is the right area to post this? I have recently purchased a salon chair. My balance is bad, when sitting on a wood dining chair, I ha… --- ## [The importance of exercise](https://forum.livingwithataxia.org/t/the-importance-of-exercise/5312)
**Author:** [@athlete](https://forum.livingwithataxia.org/u/athlete)\ **Replies:** 39\ **Last updated:** [July 2, 2022, 10:57am UTC](https://forum.livingwithataxia.org/t/the-importance-of-exercise/5312 "2022-07-02T10:57:14Z")
It’s easy to understand the links between exercise and bodily health. You can see muscles grow, or – if you’re a scientist – slice out a tiny sample of muscle and measure the molecular changes triggered by your workout. … --- ## [Informative link](https://forum.livingwithataxia.org/t/informative-link/8663)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 0\ **Last updated:** [March 31, 2022, 2:57pm UTC](https://forum.livingwithataxia.org/t/informative-link/8663 "2022-03-31T14:57:11Z")
Beryl is having trouble with posting links. She asked me to post this informative link. --- ## [New testing in the offing](https://forum.livingwithataxia.org/t/new-testing-in-the-offing/8576)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 3\ **Last updated:** [February 25, 2022, 1:06pm UTC](https://forum.livingwithataxia.org/t/new-testing-in-the-offing/8576 "2022-02-25T13:06:49Z")
We are very pleased to see this article describing a new DNA test which can be used to detect neurological disorders. Eileen, a patient at the London Ataxia Centre, was diagnosed with FA through this study. See the Guar… --- ## [Do you qualify for a research study](https://forum.livingwithataxia.org/t/do-you-qualify-for-a-research-study/8575)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 0\ **Last updated:** [February 16, 2022, 7:54pm UTC](https://forum.livingwithataxia.org/t/do-you-qualify-for-a-research-study/8575 "2022-02-16T19:54:19Z")
--- ## [How to share a diagnosis](https://forum.livingwithataxia.org/t/how-to-share-a-diagnosis/8574)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 0\ **Last updated:** [February 16, 2022, 7:28pm UTC](https://forum.livingwithataxia.org/t/how-to-share-a-diagnosis/8574 "2022-02-16T19:28:51Z")
Good information https://www.brainandlife.org/articles/how-to-share-diagnosis-with-friends-family --- ## [Seelos Therapeutics Announces FDA Acceptance of Investigational New Drug Application and Grant of Fast Track Designation for SLS-005 (IV Trehalose) for the Treatment of Spinocerebellar Ataxia](https://forum.livingwithataxia.org/t/seelos-therapeutics-announces-fda-acceptance-of-investigational-new-drug-application-and-grant-of-fast-track-designation-for-sls-005-iv-trehalose-for-the-treatment-of-spinocerebellar-ataxia/8509)
**Author:** [@ataxiabr](https://forum.livingwithataxia.org/u/ataxiabr)\ **Replies:** 0\ **Last updated:** [November 18, 2021, 1:11pm UTC](https://forum.livingwithataxia.org/t/seelos-therapeutics-announces-fda-acceptance-of-investigational-new-drug-application-and-grant-of-fast-track-designation-for-sls-005-iv-trehalose-for-the-treatment-of-spinocerebellar-ataxia/8509 "2021-11-18T13:11:53Z")
Trehalose, which is currently an investigational molecule, has demonstrated favorable safety and efficacy in 59 patients across two Phase II studies in rare diseases (OPMD and SCA3). Additional trehalose studies are on… --- ## [Current Brain and Life Magazine](https://forum.livingwithataxia.org/t/current-brain-and-life-magazine/8483)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 4\ **Last updated:** [October 22, 2021, 1:27pm UTC](https://forum.livingwithataxia.org/t/current-brain-and-life-magazine/8483 "2021-10-22T13:27:56Z")
I just received the latest copy of Brain and Life. It’s one of the best that I’ve seen regarding Ataxia and movement disorders. Read it; I think you’ll agree. --- ## [Riluzole](https://forum.livingwithataxia.org/t/riluzole/5598)
**Author:** [@DRESTEEL](https://forum.livingwithataxia.org/u/DRESTEEL)\ **Replies:** 28\ **Last updated:** [September 2, 2021, 1:40am UTC](https://forum.livingwithataxia.org/t/riluzole/5598 "2021-09-02T01:40:55Z")
ANYONE HAVE ANY EXPERIENCE with this drug. My Neuro prescribed it today. From what I'm reading they will prolly deny me. It's used for ALS but some success with ataxia --- ## [Disability grants in the UK](https://forum.livingwithataxia.org/t/disability-grants-in-the-uk/8399)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [July 2, 2021, 10:26am UTC](https://forum.livingwithataxia.org/t/disability-grants-in-the-uk/8399 "2021-07-02T10:26:55Z")
:slightly\_smiling\_face: If you live in the UK, and needed to be pointed in the right direction to apply for disability grants… See. disability-grants.org --- ## [What to expect from your GP or Neurologist](https://forum.livingwithataxia.org/t/what-to-expect-from-your-gp-or-neurologist/8339)
**Author:** [@katebey](https://forum.livingwithataxia.org/u/katebey)\ **Replies:** 14\ **Last updated:** [April 14, 2021, 4:07pm UTC](https://forum.livingwithataxia.org/t/what-to-expect-from-your-gp-or-neurologist/8339 "2021-04-14T16:07:34Z")
Hello everyone, This is my first post. I was diagnosed with Late Onset Cerebellar Ataxia in Feb 21 by a Neurologist in a short appointment after waiting a year for one. I was referred for blood tests and an MRI. My ne… --- ## [Genetic Testing for the Ataxias](https://forum.livingwithataxia.org/t/genetic-testing-for-the-ataxias/8332)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [March 31, 2021, 4:10pm UTC](https://forum.livingwithataxia.org/t/genetic-testing-for-the-ataxias/8332 "2021-03-31T16:10:21Z")
--- ## [National Ataxia Foundation 2021 online Conference](https://forum.livingwithataxia.org/t/national-ataxia-foundation-2021-online-conference/8295)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [March 3, 2021, 9:29am UTC](https://forum.livingwithataxia.org/t/national-ataxia-foundation-2021-online-conference/8295 "2021-03-03T09:29:58Z")
https://ataxia.org/2021-annual-ataxia-conference/?fbclid=IwAR05GZO2o7fL-4emp8fSFD4xaPOgwQJIiaT50Ml2GKC1zuE9RUBrhW\_J21A --- ## [New research feb 2021](https://forum.livingwithataxia.org/t/new-research-feb-2021/8290)
**Author:** [@Parna](https://forum.livingwithataxia.org/u/Parna)\ **Replies:** 18\ **Last updated:** [March 2, 2021, 7:03pm UTC](https://forum.livingwithataxia.org/t/new-research-feb-2021/8290 "2021-03-02T19:03:23Z")
This is an article about my doctors (dr Scott Barbuto and dr Kuo) at ny Presbyterian basically touting the research that sweaty aerobic exercise increases the volume of cerebellum as opposed to gentle balance training as… --- ## [Research news from AtaxiaUK 2020](https://forum.livingwithataxia.org/t/research-news-from-ataxiauk-2020/8244)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [January 18, 2021, 3:26pm UTC](https://forum.livingwithataxia.org/t/research-news-from-ataxiauk-2020/8244 "2021-01-18T15:26:58Z")
https://www.ataxia.org.uk/ataxia-research/research-news/?fbclid=IwAR1ZgRV19M8XPX\_Z-qXi-Th\_clkzhKdVijtLah8KL8MBEydgp73lePOSoFc --- ## [Rare diseases and COVID-19](https://forum.livingwithataxia.org/t/rare-diseases-and-covid-19/8242)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 0\ **Last updated:** [January 12, 2021, 3:46pm UTC](https://forum.livingwithataxia.org/t/rare-diseases-and-covid-19/8242 "2021-01-12T15:46:51Z")
--- ## [Volunteering for Clinical Trials](https://forum.livingwithataxia.org/t/volunteering-for-clinical-trials/7007)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 21\ **Last updated:** [October 1, 2020, 8:22am UTC](https://forum.livingwithataxia.org/t/volunteering-for-clinical-trials/7007 "2020-10-01T08:22:52Z")
I’ve been looking at the clinical trials and it appears that all of them require that the person knows what type of SCA they have. I’ve never been tested \[I don’t care what type only a cure} so I guess that I can’t volu… --- ## [SCA Source Spotlight on Research 2020](https://forum.livingwithataxia.org/t/sca-source-spotlight-on-research-2020/8072)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [August 21, 2020, 12:48pm UTC](https://forum.livingwithataxia.org/t/sca-source-spotlight-on-research-2020/8072 "2020-08-21T12:48:13Z")
--- ## [Vitamin D and Vertigo study](https://forum.livingwithataxia.org/t/vitamin-d-and-vertigo-study/8053)
**Author:** [@maryseas](https://forum.livingwithataxia.org/u/maryseas)\ **Replies:** 8\ **Last updated:** [August 14, 2020, 8:08pm UTC](https://forum.livingwithataxia.org/t/vitamin-d-and-vertigo-study/8053 "2020-08-14T20:08:21Z")
I have constant Vertigo with my Ataxia that improves with activity (often in summer) and worsens in winter. I have been Vitamin D deficient and hover now at low normal. This study may explain why. Despite having defic… --- ## [Received from CoRDS-rare diseases](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017)
**Author:** [@Chas521](https://forum.livingwithataxia.org/u/Chas521)\ **Replies:** 9\ **Last updated:** [July 23, 2020, 2:15pm UTC](https://forum.livingwithataxia.org/t/received-from-cords-rare-diseases/7017 "2020-07-23T14:15:03Z")
It’s self-explanatory. I filled it out but it’;s up to you. https://www.surveymonkey.com/r/AtaxiaIllnessRepresentation --- ## [Genetic approach to treat many Spinocerebellar Ataxias](https://forum.livingwithataxia.org/t/genetic-approach-to-treat-many-spinocerebellar-ataxias/7904)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 4\ **Last updated:** [June 23, 2020, 4:19am UTC](https://forum.livingwithataxia.org/t/genetic-approach-to-treat-many-spinocerebellar-ataxias/7904 "2020-06-23T04:19:12Z")
--- ## [New findings for SCA7 - 2020](https://forum.livingwithataxia.org/t/new-findings-for-sca7-2020/7945)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 0\ **Last updated:** [June 5, 2020, 12:36pm UTC](https://forum.livingwithataxia.org/t/new-findings-for-sca7-2020/7945 "2020-06-05T12:36:34Z")
--- ## [Prime editing of the Crispr gene, what it means to Ataxians](https://forum.livingwithataxia.org/t/prime-editing-of-the-crispr-gene-what-it-means-to-ataxians/7810)
**Author:** [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)\ **Replies:** 2\ **Last updated:** [May 2, 2020, 12:35pm UTC](https://forum.livingwithataxia.org/t/prime-editing-of-the-crispr-gene-what-it-means-to-ataxians/7810 "2020-05-02T12:35:22Z")
(https://scasource.net/2020/01/24/snapshot-the-next-generation-of-crispr-is-prime-editing-what-you-need-to-know/) [Next page](https://forum.livingwithataxia.org/c/general/news-research-and-clinical-trials/9.md?page=1)