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      Amanda
      Keymaster

      The Ice Bucket Challenge brought a lot of attention to ALS.  It also generated a lot of funds for research. It seems like rare diseases, such as ALS, don’t get as much attention or funding as more common ones. I love reading about, and participating in ALS Awareness events. My family, mostly in Missouri, are very active in the ALS Association in St.  Louis. They volunteer at the office, have several teams for the Walk to Defeat ALS, donate time and money  and volunteer for medical research.We have lost a lot of family members to ALS, and most of us have the SOD1 mutation.  Since I live in Florida I don’t always get to participate, but I show my support as much as I can.  I loved reading about this new event for ALS Awareness https://alsnewstoday.com/2019/04/25/als-therapy-development-institute-hosting-tri-state-trek-raise-funds/  What kinds of events are you and your family involved in?

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