Staci Kasprzyk

Staci Kasprzyk is on the board of the Mid-Atlantic Connection for PKU and Allied Disorders.  In 2014, Ms. Kasprzyk’s first child, Norah, was born.  Soon after her birth, Norah was diagnosed with PKU, and Ms. Kasprzyk explains how she found support during this critical time from parents in the area, as well as support groups.  Now, Ms. Kasprzyk is an advocate for patients with PKU, and she is involved with many groups and events contributing to finding a cure.  She served as the chairperson for the 2017 “Lifting the Limits for PKU” gala, and went to Washington, D.C. to lobby for the Medical Foods Equity Act with the National PKU Alliance.

Ms. Kasprzyk is an involved activist for PKU patients and research.  The cost of the formula that PKU patients have to drink every day is $40 per can, and insurance doesn’t cover much of the food or formula needs.  Ms. Kasprzyk and her husband are fighting to get more support from lawmakers, with the ultimate goal of getting insurance to cover the formula, as it is a necessity for these patients.  She also has helped raise money for research into treatment for PKU, and has stated that she will continue her activism until a cure is found.