Patient Advisory Committee}
Parent of Child with Rett Syndrome
Ben is a musician based in Atlanta, GA. His latest album, Grown Up Love, was written in the wake of his daughter Carmela’s diagnosis with Rett Syndrome to give his family strength in the most difficult time of their lives. “Lucky Us” has become our constant reminder to appreciate the beauty right in front of us all and has also touched others in the patient community. Ben is grateful to Alcyone for leading the way to a brighter future for these girls. Lucky us!