Holly Johnson
Biography
My name is Holly Johnson, and I am the Lay Advocate Representative for Arkansas. I work at the University of Arkansas for Medical Sciences. I have a B. S. in Organizational Management from John Brown University.
My family lives in Jacksonville, Arkansas. We have three daughters, Sarah – 11, Lauren – 9, and Jenna – 2. I became involved in the world of genetics when Sarah was 10 days old. She was diagnosed with classical PHENYLKETONURIA (PKU) by the newborn screen in Arkansas. She was immediately put on a low protein medical diet and has stayed on diet ever since. Due to her diligence to stay on diet, she has grown into a beautiful young lady with many accomplishments. While the cost of this diet is obscenely expensive, it is vital to her health. When Sarah was born, there were no insurance laws in place in Arkansas that mandated coverage of the metabolic formula or medically modified low protein foods.
In 1999, I successfully lobbied for insurance benefits and tax credits for individuals with PKU. In 2003, the law was amended to include additional metabolic disorders with similar treatment regimens. I have served on the Arkansas Genetics Health Committee (formerly Arkansas Genetic Services Advisory Committee) since 1997. I have been a patient advocate for Arkansas Children’s Hospital for many years by speaking with families of newly diagnosed PKU patients. I have chaired an international charity project for PKU patients in the country of Jordan. I have written two resource guides for patients and families affected by PKU and the newborn screen disorders. In my spare time, I am also a Girl Scout leader and softball coach.
I am very interested in working with the Heartland Regional Genetics Collaborative to spread awareness to the public and help better the lives of people affected with genetic disorders.
Pictures
Sarah, Holly's Daughter
John and Holly Johnson with children Jenna, 2,
Lauren, 9, and Sarah, 11 (August 2007)
My Story
Coming soon.