Allyson Damikolas

Mother & Carer

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Allyson Damikolas is the mother of three children, including two daughters affected by a mitochondrial disorder. Allyson left her career as a chemical engineer in 2003 to advocate for her children full time. Over the past decade, she has faced numerous challenges and gained significant experience in her essential role as the parent of children with a rare disease. These experiences include 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. Today, Allyson’s children are doing well. While still impacted by a complicated disease, all three children are top academic performers in typical classrooms and participate in extracurricular activities. Through her advocacy, Allyson necessarily became very involved with the local schools. Allyson is currently the president of the Parent Teacher Organization at her daughters’ school and serves on the Special Education Advisory Committee for the school district. In the 2020 election, Allyson will be running for a position on the local school board to expand her advocacy for all the children in her community.