Bio
Liz is a caregiver and advocate whose work is rooted in lived experience and a deep commitment to improving outcomes for families affected by rare disease. Her advocacy journey began in 2018, after her 2½-year-old son, Elliott, experienced life-threatening complications from undiagnosed HCU. Following Elliott’s diagnosis of classical homocystinuria, a simple internet search led Liz to HCU Network America—a connection that would prove life-changing and one she now considers among her greatest blessings.
"Keynote"
In 2019, Liz joined Danae Bartke and Margie McGlynn in presenting to the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) to highlight the urgent need to revise newborn screening for homocystinuria. Sharing Elliott’s story at that meeting sparked a lasting interest in newborn screening policy and a commitment to using her family’s experience to help drive meaningful change.
