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      Amanda
      Keymaster

      Yesterday I spoke with one of the neurologist involved in the Pre-fALS study. It wasn’t the doctor I see for my visits, but she was just as informative and took the time to answer some of my questions in layman’s terms.

      From what I understand, research teams from all over the world are collaborating and sharing information about genetic mutations and ALS. As for the Pre fALS study, which is focusing on identifying biomarkers so that they can diagnose ALS earlier and with more accuracy, now has a waiting list for new participants. That is rather bitter-sweet to me. That means there are so many people who possibly have a genetic mutation are literally waiting 6 months to get genetic testing to just to see if they qualify for the study. You must test positive for a genetic mutation in order to participate, or be part of the control group.  The study provides the genetic counseling and the genetic testing. That is absolutely amazing that so many people are willing to volunteer for medical research, but that also means that all of those people have someone (likely 2 or more family members) that have ALS, and that is heartbreaking to me.

      I think everyone volunteering for medical research for ALS deserves a LOUD SHOUT OUT and Thank you! I know that I have not been financially compensated for any of the studies I have volunteered for and I would never expect to be financially compensated. I volunteer because I have a mutation and I have lost many people to ALS. I’m motivated to want to help and since I was put in a position to do so, I do.

      We all volunteer for things that are meaningful to each of us. Some ALS forum members write blogs, recruit teams and participate in their local Walk to Defeat ALS, some donate, some volunteer at different organizations and other volunteer for medical studies.

      How do you or your loved ones help promote ALS Awareness or help find a cure?  Every contribution is major!

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