This week NEALS is holding a big annual conference in Florida. The agenda is extremely interesting for those interested in ALS clinical research and changes that may be in the wind.
https://www.neals.org/uploads/blog/doc/2017_Annual_NEALS_Meeting_Agenda.reformat_v.1.0.pdf
The meeting is not webstreamed to our knowledge. A few (including @NEALSconsortium ) have tweeted or posted on Facebook. Unfortunately they have not given us any insights into valuable content.
There was the news of the Pirate Cruise --
There was a special kind of irony when we saw this slide. Were they actually talking about "nothing about us without us" without us?
And we learned about the Luau.
The dozens of people with ALS who have been trained at the post-conference CRLI sessions in past years may actually be interested in the science and clinical research processes you are discussing this year. Hundreds of us who donate and advocate for better clinical trial participation care deeply about the valuable discussions that take place after all those title slides.
Avast, ye. We're here. #PatientsIncluded #EveryoneIncluded , please.
Aloha.
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