David Taylor

@BobbyCray3 @iamalsorg @ChrisCoons Dear Bobby, please send me a DM and I'll see if there are any connections I can make in Saskatchewan.

@iamalsorg @ChrisCoons How do we get help for an ALS patient who was conned by Dr Dayan Goodenowe and went to Canada for his treatment only to be mistreated, placed on a ventilator and now can’t get home?? We need help!! She’s dying and just wants to get home.

Thank you to ALS champion @ChrisCoons for your continued support of the ALS Caucus! To see if your elected officials have joined the Caucus, click here: iamals.org/build-congress…

@EUpALS @EvyReviers Thoughts with you and your family Evy. I’m so sorry to hear this. ❤️

It is with great sadness that #EUpALS informs you on behalf of our chairwoman @EvyReviers the passing away of her father Danny. Danny was the great inspirer of ALS Liga Belgium, and for long time a member of the EUpALS Patients and Carers Expert Board.

Help shape MND/ALS research! 🧠 LifeArc’s new survey focuses on tech to improve daily life with MND. Last time, @lifearc1 received 200 responses—thank you! 🙏 📢 If you have MND/ALS, care for someone, or are at risk, your input is crucial. @lifearc1

@bsw5020 Call it out. This has been done with NME. Is there any group who has created more division through misinformation?

Hypothetically, if one group is responsible for much of the misinformation that causes the ALS community to be divided, what steps would you take?

🪣 The Ice Bucket Challenge was a giant leap forward for understanding ALS/MND. To mark the 10th anniversary of the challenge, we've created a special video. Thank you to @biogen for supporting this video.🙏 youtu.be/P4uBp-POT1o?si… #EveryAugustUntilCure #ALSMNDWithoutBorders

Celebrate the 10th anniversary of the #ALSIceBucketChallenge and take the plunge with ALS Canada! 🧊🎉 Ten years ago today, Aug. 6, to Dec. 31, 2014, over 260k Canadians took part in the Ice Bucket Challenge, raising awareness and $17.2 million for #ALS. Take on the challenge again and tag ALS Canada - or donate today and invest in Canadian ALS research and support Canadians living with ALS: bit.ly/4dmdpM1.

@als_now @Humbl4now @onein300 @KRob8753 @FierceBiotech @FDA @lisamurkowski @RepSchakowsky @ShereeWLWT @WSJopinion @statnews @biospace @NINDSdirector @BrainstormCell @HouseDemocrats @HouseGOP @SenateDems @SenateGOP Participating in another trial usually indicates someone believes it could have some value but still lacks convincing evidence of efficacy.

Ah. So you think MassGen and Merit would just agree to be a Phase 3b trial site and P.I. (again) if there wasn't already "solid or convincing evidence?" Why? They seemed really busy to me when I went each time. Then again, she's a M.D. that knows the data and that the trial design w/floor effect could have caused a huge Type 2 error. Nevermind the loss of all pulmonary data and the long run in. And maybe she's not biased.

Wait? Q: Isn't this exactly what was admitted (then derided) from the #NurOwn Phase 3 trial results? Seems to me the plan here is to maximize any result in any subgroup 😱 to ensure an approval. But for who? Patients with FRS-R of 40 and up? So another Radicava. Awesome. And I'll bet the primary endpoint isn't a 1.25 point reduction in slope either. Takers? What about the fact both ingredients have @US_FDA black box warnings? #endals

@Humbl4now @als_now @onein300 @KRob8753 @FierceBiotech @FDA @lisamurkowski @RepSchakowsky @ShereeWLWT @WSJopinion @statnews @biospace @NINDSdirector @BrainstormCell @HouseDemocrats @HouseGOP @SenateDems @SenateGOP I think if there ever was even a hint of solid, convincing evidence, many would accept that. But without a convincing large effect, the system is also not setup for LPs to a large percentage of ALS & why ASOs for "sporadic" ALS will also likely be held to the same requirement.

@als_now @onein300 @KRob8753 @FierceBiotech @FDA @lisamurkowski @RepSchakowsky @ShereeWLWT @WSJopinion @statnews @biospace @NINDSdirector @BrainstormCell @HouseDemocrats @HouseGOP @SenateDems @SenateGOP Well I agree but that means nothing. Like I said, if FDA and CBER had granted a post marketing study, then there would be no argument now. Next year there will be another opportunity to do the right thing but sadly the critics will likely say “more evidence needed” once again.

@Sanghai_MedChem @Jeanc9orf72 cell.com/neuron/fulltex…

@Jeanc9orf72 @VPResearch_ALS Could you please share the paper link… thank you @Jeanc9orf72

Possibly a hot take but can we now officially stop funding & presenting work on poly-GA, GP, GR toxicity, at least in the absence of anti-sense strand DPRs?

@als_now @LorriCav @alsassociation Those companies are making $ off of ALS so they give back more to charitable purpose. It's on organizations to make sure they don't let it influence how they do their work, including pushing back on those companies & being willing to drop those $ if out of line. I hope most do.

@VPResearch_ALS @LorriCav @alsassociation So you don't find it odd whatsoever that every single approved ALS drug sponsor still funds #ALSA? Is #MNDCANADA "sponsored?" too? All these drugs are already approved. Is it perhaps because their evidence was marginally effective, amd they seek support? Seems odd.

Recently, some people have been accused of not genuinely advocating for #ALS but instead supporting a single drug. I wonder where these individuals stand on Clene's data and their application for accelerated approval. While I support regulatory flexibility, this might be going too far. Clene claims survival benefits, but their comparison is to an ALS database rather than an RCT. Additionally, the biomarker data is cherry-picked from the 30 mg group with only 55 participants. The RCT included both 30 mg and 60 mg doses. They used prespecified covariates for survival analysis, but only for the 30 mg dose. The biomarker data is based on those with higher baseline NFL levels and only includes responders. This cherry-picking is quite extraordinary and all post hoc. Where are those ALS advocates now? The bigger question: are they truly ALS advocates or just anti-one-drug advocates? @ALSMNDMamaBears @BellinaDeb @KandySimons @klink52 @BridgetRebecca4 @plainJaniexx @Shines2017 @mattwoman @ginaGib68993499 @makerisafer @mustangshellyd @Smithstrongmom1 @TheRevDrLeslie @nicolecimbura @FarberStacy @BartBaker @HaterAls @als_now @aVoice4ALS @sabrevaya @iamalsorg @bsw5020 @MinoShah @nadia_sethi @VPResearch_ALS @onein300

@als_now @LorriCav @alsassociation There are many of us in orgs. that actively push back on an influence or bias towards industry who support activities with $. Most of us don't want that either. Your guesses as to how these things are handled just hinder progress.

@VPResearch_ALS @LorriCav @alsassociation The scientists and clincians don't run a charitable organization. And you don't understand the potential for receiving support for something by offering financial benefit to an organization who makes money by hosting big events? Good thing you're not into politics.

This programme is awesome. If you are eligible (not just UK!), please consider it.

@als_now @LorriCav @alsassociation Not sure I understand the question. Clene has sponsored some things. BrainStorm has sponsored some things. Honestly most scientists & clinicians who go to conferences couldn't tell you who sponsored what so the likelihood meeting support influences decisions is pretty low.

I just realized I forgot to ask whether you knew any fundraisers or #ALS / #MND organizations that believe CLENE AU-8 is good enough yet to begin to accept its "sponsorship" money? Or has it already? @alsassociation had no problem taking money from #BCLI to pay the bills by selling stuff like a $30,000 "coffee and snack break" at a recent vayconference. #ALSleazy #ENDALS

@alsadvocacy This one is particularly complicated in the use of groundbreaking & pivotal bc they also infused in a person living with ALS. Bottom line, is it worth exploring more? Sure. Have we seen these types of things in G93A mice & n of 1 open label treatment? Yes, many times.

Lucky rodents... Groundbreaking Study in The FASEB Journal Shows Pr | Newswise d.newswise.com/articles/groun…

“It’s easy to go and sit in the lab, and get good at science, but unless you can communicate that science there’s no point having done it.” #MNDEnCouRageUK aims to give #MND #ALS early career researchers the skills to communicate their research to the people it matters most – people affected by the disease. Read more: mndresearch.blog/2024/07/18/mnd…

Are you an early career #MND #ALS researcher? Attending #alsmndsymp? Want to develop your science communication skills? Apply to be a Symposium Communications Ambassador and help us share the latest research from the largest conference dedicated to ALS/MND! More info: symposium.mndassociation.org/about-the-even…

@JackHumphrey_ @TargetALS_fdn @SinaiBrain @UCLIoN @UKDRI @RickiePatani @HaselPhilip Awesome Jack!

Very excited to receive funding from @TargetALS_fdn for our international consortia between @SinaiBrain , @UCLIoN and @UKDRI at Edinburgh. @RickiePatani, @HaselPhilip , Andrea Malaspina, really looking forward to working with you all!