My progression is slow, and I rejoice! I love life and will fight this disease with everything that I am.
It’s a Family Affair.
So far, four of eight children have tested positive for C9orf72. Two have manifested ALS; one of those two has passed. I am the other. I have been an actor, dancer, singer, director, choreographer, teacher, artist and professional wig and makeup designer for the opera. I am a wife and mother of three. I am now an ALS advocate, and I still try to dance. I was diagnosed in 2017 after a year of symptoms that were unexplained. I have Bulbar Onset ALS which is now affecting my limbs. My progression is slow, and I rejoice! I love life and will fight this disease with everything that I am.