David Taylor

There seems to be some chatter about Ellorarxine as a 'miracle drug' for ALS/MND right now. For perspective, there are many other drugs that currently have the same level or far more published evidence of potential value for ALS/MND. Often. We probably see a few per month like this. So let's see...

NeufStrong I play many roles, the least important of which is that of an ALS patient.

Outlined so well with costs etc. by this gentleman neufstrong.com/neuronata-r

Given Canada’s NOC/c pathway for potential early approval, we could see similar stuff here, with the added concern of whether it damages Cdn trial sites being chosen bc companies would have to allow standard of care treatment, which would complicate their studies.

www.koreabiomed.com/news/article...

WATCH: Analyst Sarah Langs, battling Lou Gehrig's disease, receives heartwarming standing ovation at 2024 All-MLB Awards Show The league recently held the All-MLB Awards Show at The Chelsea at The Cosmopolitan in Las Vegas, Nevada.

www.sportskeeda.com/baseball/new...

It would be amazing if everyone connected to ALS reposted this. It says many of the things researchers have said behind the scenes for years, in publication form.

Agreed. And I also hate to see people with ALS waiting with high hopes for any trial because they have been helped to believe it has better evidence of efficacy than it does.

Exciting news! We've recruited the 1st patient for our #ALS Biomarkers Study. This project aims to better understand why #MND happens, what influences its progression, and how we might slow or stop it. We're thrilled to begin this vital work and discover new insights!🔬

Agreed. I just read it & this will be a great tool for advocates of good science to reference. It covers so many key things that we all talk about in a very brief & clear manner. Thank you @rpavaneijk.bsky.social!

You must be having a fun year!

Eventually some may say it is the renowned Verb Hotel, which is fun.

Thank you. Can't wait to read this. Given the authors & the current P2 --> P3 landscape, I can only imagine this will be an important & timely piece.

Kaly Mueller, Senior Associate Scientist at ALS TDI, was awarded one of three Poster Prizes for her outstanding presentation at the 35th International Symposium on ALS/MND this past weekend.

My concern with enrolling fast progressors is based on the learnings from tofersen. If we effectively hit the primary upstream target of pathogenesis & it's still not early enough to stop disease, how can we expect to have a measurable effect by targeting one of many generic, downstream mechanisms?

Check out the ALS Trial Navigator – your comprehensive resource for making decisions about ALS clinical trials. Use our tools to understand your clinical trial options and have informed discussions with your care team. Learn more here: www.als.net/als-trial-navigator/

The NeurdyPhagy Lab is in Montreal talking all about palmitoylation in ALS MND. Stop by our posters & say hi.
@jesuisyasmeena.bsky.social
@cailyncreative.bsky.social

We are excited to be here in Montreal for @mndassoc.bsky.social #alsmndsymp! We would be delighted to see you at our posters - see below for our presenters and poster numbers #MND #ALS

We also have several group members giving platform talks as well as a plenary lecture! We would be delighted to see you there - see below for our presenters and talks #MND #ALS @mndassoc.bsky.social #alsmndsymp

Important work Lizzie and great talk at the Symposium.

You’re getting to be almost as good as Ahmad at selfies.

@ammar.alchalabi and Kuldip Dave on a stage at the Congress Centre in Montreal

The end of the 35th International Symposium on #ALS #MND in Montreal. A fantastic few days with the world's leading ALS researchers in the company of patient fellows. Thank you to the @mndassoc.bsky.social @alscanada.bsky.social Brian Dickie and the wonderful MNDA team for putting it all together.

A Patient Fellows scarf on @ammaralchalabi.bsky.social on the big stage.

Oof. Can we get an AI based autocorrect program that changes “breakthrough” to “interesting” or “intriguing” already? This after touting efficacy signs from their open label trial earlier this year.

I heard from many people that Healing ALS was at the Symposium. I didn’t cross paths but I feel like it would be great for someone to do a (very compassionately approached) study on the feelings of people whose loved one died after spending all their money and effort on the 47 Steps to Healing ALS.

The talk on the negative C9ORF72 ASO trial sticks with me most. ASO got into neurons and stayed there, sense strand DPRs decreased in CSF, but they were still present in tissue! Do we need to try sense strand gain-of-function again? How do we trust CSF readings to reflect tissue moving forward? 🤕

This reminds me that someone should check-in on Tikomed and Helixmith about their HGF development. I suppose I could just Google them. HGF is not uninteresting based on preclinical data…

Let’s move away from early dx term and call it what it should be — prompt dx. #alsmndsymp

Just on a train home from seven full days of meetings in Montreal with 1000+ of my favourite global peeps and a whack-load of Canucks. So many people tackling big problems collaboratively. This is one of my takeaways of 2024 vs. years past. Progress can be hard to see but it’s definitely there.

But we are making progress and people are working hard, with urgency!

I could give many tips for reading press releases about ALS discoveries & treatments. For now, just remind yourself that the data & statistics you see are almost never the actual story. Breakthroughs usually aren’t breakthroughs & great trial results are usually polished up to look their very best.