8/21/18 Who Lives Like This: Jason, Elizabeth and Jeneva had a lively discussion about the labyrinthine path to diagnosis, the conflict of knowing or not knowing what's happened to your child and the randomness of rare genetic mutations that might be "discovered" but have no applicable treatments.
This video introduces my advocacy for my son Robert, who has a rare disease. Rob's diagnosis arrived over the course of 14 years of scientific advances in genomics. Rob & I don't quit. #healthcarevoter #dayinthelifedisability