My daughter Elena was 26 when she was diagnosed with FUS ALS. She had weakness in her right arm for a few months prior but was afraid she had MS like her grandfather and didn’t say anything. She was able to get a new drug (jacifusen) because of the expanded access program and received 5 doses before she could no longer make the trip from RI to NY. I was her caretaker. I cherish the memories we made in the 11 months before she passed away and I miss her every single day. I try to keep her legacy alive and help other people with ALS as much as I can.