Allyson Damikolas is the mother of three children, including two daughters affected by a mitochondrial disorder. Allyson, a chemical engineer, left her profession to care for and be an advocate for her children full time. She and her husband, Marc, understand the challenges of parenting children with a rare disease. Their experiences navigating clinical medicine, participating in research medicine, evaluating and deciding upon emerging therapies, negotiating with insurance companies, interfacing with social services, and garnering full educational support in the public-school system have yielded positive results. Today, their children are thriving. Despite the complications of having a rare disease, Victoria and Audrey excel academically and participate in many extracurricular activities. Allyson’s involvement in her children’s schools led to her decision to run, and win, a seat on the Tustin Unified School District Board of Education in 2020. She serves in other leadership roles in her community, including serving on the Special Education Advisory Committee for the school district. Allyson believes every child deserves the resources and advocacy to reach their full potential.
Conference Keynote Speaker