Fundraise Your Way for PKU

Cassandra Carlile

Cassandra Carlile

Thank you for supporting #fundraise4pku!

Our daughters were born with a rare metabolic disease called Phenylketonuria
(PKU). PKU is a rare, in-born error of metabolism that prevents affected individuals
from properly metabolizing an essential amino acid called Phenylalanine. PKU
requires a life of unimaginable dietary restrictions to ensure optimal health. We are
partnering with the National PKU Alliance (NPKUA) to raise money for PKU research
and to ultimately, find a cure.

Without prohibitively expensive medical food, special formula, and constant
monitoring with blood tests, children with PKU can develop mental challenges in a
short period of time. Because it is a very rare disease – there are only 16,455
people with PKU in the US today – the burden of funding therapies and finding a
cure falls on those families and individuals who are personally affected by this
disease. If left untreated, PKU will cause phenylalanine to build up to toxic levels in
the brain, and lead to intellectual disabilities, seizures, behavioral problems and
mood disorders. There is currently no cure available, only treatments to help manage
the effects of PKU. Our daughters are truly blessed, and with constant
monitoring of their diets and blood levels, they are thriving; however, we know today
that those treatments are not good enough. That’s why many children with PKU eat roughly 7 grams of protein per day. To put that in perspective, that’s 2 slices of bacon.

We are hosting our 5th Annual Wiffleball Tournament, Pitches for PKU, on
Saturday, August 27, 2022.  Our goal is to raise $25,000 and a great deal of
awareness in our community. All funds raised will go to the National PKU
Alliance’s NPKUA Fund to grow and strengthen the quality and quantity of
PKU research to accelerate the development of new therapies and an eventual

Please join us or support with a donation!

Cassandra Carlile
Cassandra Carlile