We raise a CHAMP1ON

My son is one of only 57 in the world diagnosed with CHAMP1 gene mutation. He was undiagnosed for the first seven years of his life. We have connected to 52 of the CHAMP families worldwide through the facebook group I run. We recently had our first ever family and scientific conference in America where 18 families meet up. It was such an experience. I'm doing all I can to raise awareness of our rare community.