The years pass and the problems persist.
Almost a thousand ALS MND organization employees and scientists and clinicians are meeting in Milan for the big annual symposium this week. The format, accessibility, and fees continue to insulate them from the very patients and caregivers whose lives are at stake.
So far this week we saw the rollout of a twitter campaign to #shoutloud about ALS. My hopes were up that it was about raising awareness of the global problem with those who are unaware. It was disappointing that the twitter campaign wasn't designed to engage journalists and drug developers and activists and scientists and celebrities. It was yet another ALS social media fundraiser. http://www.mndfundraising.asn.au/event/shoutloudforalsandmnd/
Yesterday they had the "Ask the Experts" session, and I'm grateful for the livestream (although the time and link were a bit fluid until the last minute). The experts were interesting. It was more of a "Listen to the Experts" session, but it was informative. I have a feeling that if the room had been full of people with ALS that the doc who ended his presentation with what was supposed to be a cute "it could always be worse" ending might have rethought that one.
Every day people are diagnosed with ALS and they and their loved ones scramble to find out the most promising (and practical) ways to proceed. It's hard to sort out. This week we have the most renowned scientists discussing the most "promising" science, and those people with ALS and their loved ones are on on the outside, waiting for information through the lens of someone else. It's nuts. And it's nuts that people working on ALS science aren't hearing from directly from patients and seeing patients and learning from patients.
We live in a world that talks about the importance of patient-centricity. Talk's cheap.