The news came in by an email from a PKU advocate who has been monitoring this event closely.
"We may be a rare disease, but this project testifies to the awesome power of all of us working together for a common goal and what we can achieve," Amanda stated.
PKU is a rare metabolic disease where a person is missing an enzyme called Phenylalanine Hydroxylase and unable to break down an amino acid called Phenylalanine. Because patients are missing this enzyme, they are restricted to the amount of protein they can have. Without a lifetime commitment to a low-protein diet, a PKU'er risks detrimental adverse affects such as mental retardation and neurological diseases.
"Our dream is a cure for PKU. And while that is our ultimate goal, during this Pepsi Refresh Project, it has truly been about the climb. And on this climb we have made a lot of friends, had a lot of help, and voted a lot of times," Amanda said.
"Fund Research and Find A Cure for PKU" will provide funds for research in effort to find a cure for PKU, and improve the quality of life for all children and adults living with PKU. The grant will go to The National PKU Alliance (NPKUA), a non-profit organization. NPKUA is devoted to advance research in an effort to find a treatment or hopefully a cure. It supports local PKU organizations, educates others on the issues PKU patients and families face, and advocates for individuals living with PKU.
Congratulations to the National PKU Alliance for your recent achievement!
