nytimes.com/2024/04/25/boo…

Please share this news about RVI intensive summer courses! I'll serve this year as a director of the Horn of Africa course and we're assembling a great team of speakers.

ANNOUNCEMENT | 2024 Annual Courses

We're thrilled to announce the return of the Great Lakes, Horn of Africa, & Sudans annual courses. Register for an unparalleled chance to network & deepen your understanding of the region alongside peers and experts.

bit.ly/2024RVICourses

I’m #AllinforDavidson because this college does such a great job preparing its students for lives of leadership and service, as our amazing alums demonstrate so powerfully in their work. Make your gift today! The time is now: davidson.edu/all-in

What are you doing tomorrow? Going #AllinforDavidson , right? 'Cats go wild for days like this!

It's the 20 year anniversary of the withdraw of Vioxx from the market after it was revealed Merck skewed the clinical trial data to hide massive risk of heart attacks, leading to 55,000 premature deaths. Why we need to let the FDA do its work properly. ucsusa.org/resources/merc…

Important JAMA piece by Holly Fernandez Lynch & Aaron Kesselheim examining the aggressive mifepristone Supreme Court case. They argue politics and courts are being used to fight science & agencies, and this is exacerbated by recent suss FDA decisions,..

jamanetwork.com/journals/jama/…

NEW REPORT | PROSPERITY TO THE PERIPHERY?

In this report, Jonah Wedekind 🍉 examines the politics of resource extraction and governance in post-2018  #Ethiopia . Peripheral regions demand fair resource shares, amid shifting power dynamics.

Read more: bit.ly/3VqNDQP

'circling the wagons' is not an effective strategy for learning organizations. But that's mostly what I've seen in the past five years in the ALS space. Doesn't seem to matter which organization.

The core question at the heart of our current debates over the failed Relyvrio clinical trial is this: what constitutes effective patient advocacy, and how are we measuring it? We have to hold ourselves accountable to those metrics.

worth rereading -- press release from 2022
als.org/stories-news/f…

I'm tracking statements of all of the many ALS advocates and organizations that pressured for approval of Relyvrio. Lots of rationalizing their position. Lots of regret over the failed trial. Zero apologies or admissions they were just wrong. Will the right lessons be learned?

I wonder if the members of the Relyvrio Adcomm will speak publicly on the failed phase III trial results. I'm sure they have much to say.

definitely time for everyone in the ALS advocacy community to reread this important piece of investigative journalism from eight months ago. Makes for sobering reading. We need to rethink what we're doing. newyorker.com/magazine/2023/…

'But the case of Relyvrio, which made $381 million in sales and $49 million in profit for Amylyx last year, has underlined questions about the limits of regulatory leniency.'

Pharmas massage data from questionable results in phase II trials to stoke patient demands for conditional approval. Make a fortune before phase III trial show no efficacy. Pharma's lucrative solution to the 'valley of death.' Patient advocacy groups complicit. Patients lose.

Theme music for ALS community today: The Who, 'Won't Get Fooled Again'

All our major ALS advocacy groups pushed for conditional approval of Relyvrio despite an AdComm initially insisting on phase III trial due to unconvincing results in phase II. Will those organizations now explain themselves? Demand accountability, demand scientific rigor.