iiinova — where your digital self keeps evolving

David Taylor @vpresearchals.bsky.social · 08/01/2025

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...

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David Taylor @vpresearchals.bsky.social · 11/12/2024

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.

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Reposted by David Taylor

UK MND Research Institute @ukmndri.bsky.social · 11/12/2024

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!🔬

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Reposted by David Taylor

ALS Therapy Development Institute @alstdi.bsky.social · 10/12/2024

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.

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Reposted by David Taylor

ALS Therapy Development Institute @alstdi.bsky.social · 09/12/2024

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/

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Reposted by David Taylor

DMartin @drddom.bsky.social · 07/12/2024

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

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Reposted by David Taylor

Oxford MND Research @mndoxford.bsky.social · 06/12/2024

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

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Reposted by David Taylor

Oxford MND Research @mndoxford.bsky.social · 06/12/2024

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

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David Taylor @vpresearchals.bsky.social · 09/12/2024

Important work Lizzie and great talk at the Symposium.

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Reposted by David Taylor

Ammar Al-Chalabi @ammaralchalabi.bsky.social · 08/12/2024

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.

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

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Reposted by David Taylor

ALS Advocacy @alsadvocacy.bsky.social · 06/12/2024

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

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David Taylor @vpresearchals.bsky.social · 09/12/2024

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.

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David Taylor @vpresearchals.bsky.social · 09/12/2024

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.

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David Taylor @vpresearchals.bsky.social · 09/12/2024

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? 🤕

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David Taylor @vpresearchals.bsky.social · 09/12/2024

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…

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Reposted by David Taylor

ALS Advocacy @alsadvocacy.bsky.social · 07/12/2024

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

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David Taylor @vpresearchals.bsky.social · 09/12/2024

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.

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David Taylor @vpresearchals.bsky.social · 09/12/2024

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

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David Taylor @vpresearchals.bsky.social · 09/12/2024

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.

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