ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, October 5, 2017

Ahoy! Tweet Us Some Doubloons of Valuable Content Thar

We're not mere sprogs.  We're interested in the science.  We care about clinical research.

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 --


We get lots of title slides and pictures of presenters, but we get no content.


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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