PKU is an inherited disease where the body is unable to properly process phenylalanine (an amino acid found in all protein). If undiagnosed or untreated, the buildup of phenylalanine in the bloodstream causes severe and irreversible brain damage. Because it is such a rare disease, the financial support necessary to advance research falls on the families and individuals who care passionately about pursuing a cure; it was this personal dedication that formed the National PKU Alliance. With your help, our fundraising efforts will support this critical effort. Seldom has a grassroots effort made such a difference in the treatment of a rare disease.
Funds raised during the Move Your Pheet challenge will go towards supporting the For PKU, By PKU Mentor Program From Connecting for a Moment to Connecting with a Mentor. Currently the program is made up of 15 mentors from across the country and at various ages and stages of their PKU management. The Program is led by an Advisor who is a Pediatric Neuropsychologist with expertise in rare diseases along with our Executive Director and NPKUA Staff members. The group meets monthly to receive formal trainings led by our Advisor and discussion-based learning such as sharing of best practices and PKU resources and information. All mentee information is kept confidential. Outside of the group meetings, mentors work one-on-one with their mentees to provide support in a variety of ways from texting and emails to monthly calls and check-ins.
Our goal for 2023 and beyond is to expand the Mentor program to be able to connect and support more individuals in our community and with your help, we can do this!
Yes! It is open to everyone, you just need to, “Move Your Pheet.” You can walk, jog, run, swim or bike. Including your dog or baby in a stroller on walks is encouraged.
No. You can be an individual on your own team who simply, “Moves Your Pheet” and asks others to donate to this worthy cause.
No. But, we hope that you participate to help NPKUA improve the lives of individuals living with PKU. We provide you with the tools to make fundraising fun and easy.
Yes! The team and individual that raises the most money, will receive a special shout out on our social media channels and a prize to be announced later once all funds have been processed.