• Becoming an Advocate

    Posted by Amanda on December 14, 2022 at 7:41 pm

    Juliet Taylor struck a chord in her column, Finding Support and Community When Living With ALS at https://alsnewstoday.com/columns/i-am-als-community-provide-vital-support/.

    She shares a piece of her life and how she came to be a leader in the fight for a cure for ALS. In the column, she writes how all the interactions with “Angels” and finding a community helped guide her to the role she has now as Co-Chair of I Am ALS.

    My family lost so many people to ALS and I often wonder if anyone can really understand what we have been through. I’ve been told by my doctor from the pre-fALS study that with my family history (lost 15+ family members), my genetic mutation, and the results of all my testing with the study since 2011, I will end up with ALS. Now I know many of you are thinking, “How can your doctor tell you that?” Honestly, it isn’t anything I don’t already know and think about on some level every day.

    In 2011 I started sharing my family’s story on social media. I also started getting involved with ALS fundraisers. Within a few years, I had people reaching out to me asking about ALS because they had a friend or a family member who had just been diagnosed. In 2018 (I think) I started working for Bionews and moderating this forum. Now, I’m on a mission to help pALS, caregivers, and friends of pALS. I’m on a mission to do everything I can to help find a treatment and cure for ALS. You see, my ALS world has grown even bigger the more involved I get. Every loss makes me angry and renews my dedication to the ALS cause! This disease has been around far too long to not have a cure!!

    What is your story? Are you a caregiver, a friend of a pALS, or a pALS? Where have you found inspiration or have you? What is your role in the ALS cause?

    Amanda replied 1 year, 7 months ago 0 Member · 0 Replies
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