The Founder’s Service Award is a new award in 2008. It recognizes an individual who has given deeply and consistently over a long period to Genetic Alliance.

Jannine Cody is the mother of Catherine and Elizabeth Cody. Elizabeth, who is 23 and attends San Antonio Community College, has a chromosome abnormality called 18q-. When Elizabeth was born, the Codys were told that she would lie in a frog-like position in a vegetative state and have a normal life span. Clearly, this was inaccurate and more research needed to be done, but no one was doing it.

When Elizabeth was born, the Codys were told that 60 other families in the world had this condition. In 1990, Jannine founded the Chromosome 18 Registry and Research Society. To date, the Registry includes more than 2,000 families affected by 18q-.

In 1991, Jannine enrolled in a PhD program in Human Genetics. While pursuing her Ph.D., she developed the multidisciplinary Chromosome 18 Clinical Research Center at the University of Texas Health Science Center at San Antonio. Upon completion of her postdoctoral training, she became the Director of the Center. Jannine is now an Associate Professor and Interim Chief of the Division of Genetics in the Department of Pediatrics at the UT Health Science Center at San Antonio.

The Chromosome 18 Registry families now fund over half a million dollars a year in research. This research ranges from the molecular biology of the conditions to the clinical consequences and the psychosocial ramifications for the affected individual, the parents, and the siblings. In an effort to ensure support for research of chromosome abnormalities, Jannine has testified twice before the US Congress. Jannine served in a variety of Board of Directors positions for the Genetic Alliance from 1992 to 2007.