In 2009, she was elected an Ashoka Fellow for her entrepreneurial work in drug development for genetic conditions. She is the current President and Chief Executive Officer of Genetic Alliance, and Executive Director of PXE International, a research organization for the genetic disorder pseudoxanthoma elasticum (PXE). She is the chair of the Coalition for Genetic Fairness that advocated for the passage of the Genetic Information Nondiscrimination Acting.
She also serves on the boards of the Institute of Medicine Board on Health Sciences Policy, National Coalition of Health Professional Education in Genetics, The Rosalind Franklin Society, and the Coalition for 21st Century Medicine.
She also accepted the Paul G. Rogers Distinguished Advocacy Organization Award from Research!America in 2009. In 2013, she was named one of the Food and Drug Administration"s Rare Disease Heros.
She also serves as the President of Schola Ministries, a nonprofit dedicated to producing the music of Kathleen Deignan. She served on the Institute of Medicine Committee on the Necessity of Use of Chimpanzees in Biomedical and Behavioral Research and the IOM Committee on a Review of the California Institute for Regenerative Medicine.
She is the co-chair of the Institute of Medicine"s Roundtable on Translating Genomic Based Research for Health.