Since 2001, Micki Gartzke has been, the Education and Awareness Director for the Hunter’s Hope Foundation, which was established in 1997 by NFL Hall of Fame Quarterback Jim Kelly and his wife, Jill, after their son, Hunter, was diagnosed with Krabbe Disease. To date, the Foundation has awarded over $3.8 million to leukodystrophy and related neurological disease research. The mission of the Foundation includes broadening public awareness of Krabbe Disease and other leukodystrophies, thus increasing the probability of early detection and treatment.
Micki leads the Foundation’s efforts in state and national advocacy for Universal Newborn Screening. Recently, Micki spoke to the Newborn Screening Branch, Division of Laboratory Sciences at the CDC; participated as an Infrastructure panel member for Process(s), Roles and Responsibilities, Access, Evaluation, and Coordination at the HHS Access to Quality Testing for Rare Diseases National Conference; and was named to the Education & Training Subcommittee of the Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACHDGDNC). Micki is the mom to Lea, who passed away at the age of two from Krabbe disease.