• Lisa Bonahoom replied to the topic Research, to participate or not to participate in the forum Research Topics 1 year, 11 months ago

    I started volunteering for studies as soon as I was diagnosed.  I will fight this disease any way that I can.  When I found out that my ALS was genetic I redoubled my efforts.   My children are at risk.  Without clinical trials we have no hope.  The current meds do so little.  I did not qualify for NurOWN but I wish I did!  I was chosen for a trial that I can share when it’s over.  It gives me great hope! I continue with observational studies like PMP with ALSTDI.  I highly recommend doing whatever you can!

    • Lisa,

      Thank you for volunteering too! I have a genetic mutation and I volunteer for everything I can. I am in my 10th year of the preFals study. Because ALS has impacted my family se deeply (more than 14 family members) I volunteer for everything I can! They are making progress and I am very optimistic!!

      Amanda

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