Anyone familar with NEALS Clinical Research Learning Institute (CRLI)?

blitzc

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Apr 20, 2018
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201
Reason
PALS
Diagnosis
01/2018
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US
State
OH
I received an email this week from our local ALS Association Chapter with a link to this group accepting nominations to attend this year's two day program "dedicated to educating attendees on clinical research and therapy development and empowering this group to be advocates for ALS clinical research". Our local Association social worker thought I would be interested in attending.

I am curious if anyone has any familiarity or experience with this organization/program and whether or not it is a worthy venture.

(Moderators, please move this thread to a more suitable location if necessary.)

Cathy
 

nona

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Oct 1, 2018
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PALS
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02/2015
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NH
My encounters with NEALS have been through their free webinars, which have all been good. I think they are legit.
 

Nikki J

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Yes NEALS is a great organization. My doctor was one of the founders and Mass General maintains their research sample repository.

The group is the Northeast ALS consortium though the providers that belong are from all over now. Their focus is research and helping with trials They also regularly present educational webinars for the ALS community.

The particular program is designed to help PALS and CALS become advocates and researchers. It usually takes place in Florida as an adjunct to their yearly meeting. No unfortunately you don’t get to attend the other sessions. People who have done the program have had various ways in which they want to help. One of my FALS friends and her sister did a lot of education and advocacy. Another FALS couple ( she had c9) did fundraising for a particular research project.

It has been pretty competitive historically to get in but if you are interested and committed well worth doing I think
 
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