Lori Raines

Patient Leader

I'm Lori and I have generalized dystonia. It is barely heard of and living with it is as complex as its clinical variations. Dystonia took over my life December 26, 2008. In December 2012, I took over dystonia's life! I created a closed support group on Facebook called Neuronauts, now 2000 strong! This group is the hope, strength, friendship and knowledge we need to make it through a lot of "unknowns". It's like a giant living room with recliners, a bookcase with files, photo albums, pet pics and sleepovers! After our group was featured on CNN in 2013 in a social awareness breakthrough, we saw that we could help many who felt alone in their journey in a public capacity as well.

Past Awards Participation

Fourth Annual Health Activist Awards


Health Activist Hero


Best in Show: Community or Forum Rookie of the Year

Fifth Annual Health Activist Awards


Advocating for Another Best in Show: Community or Forum

Sixth Annual WEGO Health Awards


Best in Show: Community
Lori Raines

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