Owen

Here’s an ALS Untangled article you might want to read: https://www.tandfonline.com/doi/full/10.3109/21678421.2015.1088707

It’s in regard to this supplement (https://www.lifevantage.com/us-en/shop/protandim-nrf2), which also contains Ashwagandha. It sounds pretty similar to your Dad’s supplement. It got a promising (and rare!) “A” rating on…[Read more]

Hi Igor,

You might try contacting the ALS Therapy Development Institute. They have a form you can fill out, but I also spoke with Dileep there (contact info below), who could help put you in touch with the right people. I think the problem you’re going to face is that most organizations either a) rely on grant money for specific investigations,…[Read more]

Here’s my thought on this subject. From what I’ve read, and what my wife’s doctor at Johns Hopkins said, mouse models are really of minimal use. I think they’re typically used to justify moving on the human trials, but they’re of such little use that it’s an unnecessary delay more than anything else. We still know so little about ALS, but we know…[Read more]

Hi Danielle- My first and main question is, have you noticed any improvement?

Thanks Chuck! Anyone have any experience with any of the orgs listed here? https://iamals.org/encyclopedia-of-als-organizations/

Thanks Jonathan- that definitely helped! I never knew you could expand the contacts list in the studies. Fingers crossed the trial is able to start soon!

Jonathan- could you explain what you mean by “virtually standing in line?” I haven’t seen a link anywhere to register or otherwise get in line. We’re in DC, and close to UMD and JHU, both of which will be participating in the platform trial too.

Where is the trial taking place, and who contacted you about participating? My wife is still early in her progression, so it would be great to get her involved with any studies taking place.

Hi all- I’d be interested in hearing an update on whether or not Ibudilast has helped at all. The Phase 3 trail has been pending for a while now.

I’d also be interested in hearing if anyone knows the dose and ratio AMX 0035 used between TUDCA and <span class=”st”>sodium phenylbutyrate</span> (i.e. how many mg of TUDCA, how many mg of sod phenyl),…[Read more]

My wife has been working for the past year, but is just about to go on short-term disability, and then that might be it after that. She gets tired more easily and driving (which she does a lot of) is becoming more of a challenge, but most of the issues have been around using a computer, as she’s lost most of the use of one hand, and part of the…[Read more]

In addition to what’s in the ALSUntangled review, here is what makes me skeptical about RCH4: if you’re developing a treatment for ALS, you’re either doing it to make money, or you’re doing it because you’re passionate about solving ALS (or some combination of the two). In either case, your objective is to get your treatment in the hands of as…[Read more]

Just based on phase and study completion date, I’d put these five up at the top of the list for potential approval:

• NurOwn: https://alsnewstoday.com/nurown/; https://clinicaltrials.gov/ct2/show/NCT03280056 (study completion date: Oct 2020/Dec 2020)
• Arimocolomal – genetic only: https://alsnewstoday.com/arimoclomol-orph-001/; https://clinical&hellip;

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Hi all- I’m a new member, and thought I would piggyback off of this conversation. My wife was diagnosed with ALS recently, and I have been conducting research in a number of areas to try and wrap my head around the massive amount of information on ALS. One area I was looking into was supplements, and whether or not there is anything promising in…[Read more]