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.

Nominations

Finalist

Lori has brought people and groups together to support the awareness of Dystonia. She has started a non-profit organization for people with Dystonia while battling her own Dystonia. She is had working and committed to the cause of awareness. Just talking to her inspires others to spread awareness. — Lori

This young lady has given me a place to go when I feel alone with my Dystonia. When no one understands, I go to this family of friends. Someone is always online to chat with. I could not do without this group. Lori makes us all feel right at home. — Susie

Lori Raines has been an advocate for people with Dystonia for a number of years. What started as a Facebook Group with 1,380 members has expanded into a website that grows awareness and advocacy. — Suzanne

Lori Raines created a community for people who suffer on a daily basis, fighting a battle of pain, and involuntary movement, that most people can't even imagine, Dystonia. It changes your life. It makes you feel trapped, alone, hopeless, and scared. Her group has saved lives....people who understand and help you find and regain hope you've lost! — Jennifer

Lori created the neuronauts group as a safe private place for people with movement disorders to get together and share their stories and support one another. Without this group I would have been lost in how to deal with my son this disorder. — Lori

A very intelligent, caring woman who helps so many of us during our darkest days. This site is family to me and I will forever be grateful for this family.