Ava Szajnuk (Zanik) is a student at Skyline High School in Salt Lake City, Utah. She was born a healthy child and hit all her milestones early. An arachnoid cyst was identified when she was three years old. When Ava was five years old, she was told she had an undiagnosed genetic dysfunction, an undiagnosed autonomic neuropathy and many more syndromes. In 2013, Ava went on to have four cranial surgeries due to a subdural hygroma and is now shunt dependent. Ava continues to search for answers for the root cause of her disease processes. She has two siblings and a mother who all have an undiagnosed rare disease. Ava is on the Advisory Board for the Rare and Undiagnosed Network (RUN). She has spoken publicly at the Utah State Capitol as well as at University of Utah Health to freshman classes of medical students. She is a patient, a caregiver and an advocate. Although Ava’s disease process has hindered many of her physical abilities, it has given her the opportunity to see life through a more empathetic lens. Ava is talented at writing, singing, and drawing. She is a member of the Skyline Varsity Congressional Debate team and competes at a national level. Ava aspires to have a career as a public policy analyst with a focus in healthcare policy, and to one day influence the policy that will directly affect the people in her community.

Her passion for advocacy led her passion for public policy. She wants to learn about and help influence the policies that affect the rare disease community because rare disease patients deserve compassion and fair representation.