We invite you to support PKU Awareness by joining us for a special fundraising event.
Join us for a 7-course Coastal-Mexican dinner, featuring wine and beer pairings, plus tequila and wine tastings. Tickets are $125 each, and all proceeds go to the National PKU Alliance.
All proceeds go to the National PKU Alliance
This cause is near and dear to the McDevitts, as two young children in the family are living with the genetic disease. This year, the McDevitt team is raising funds to sponsor a table at the National PKU Gala in Nashville, TN.
The NPKUA is hosting Lifting the Limits for PKU at the Marathon Music Works in Nashville on Saturday, September 28, 2024. The goal is to raise funds that can go towards a cure for PKU.
By attending the PKU Dinner at McDevitt Taco Supply, you are helping to raise funds that will go directly to the PKU Alliance.
What is the PKU ALLIANCE
The National PKU Alliance works to improve the lives of families and individuals associated with PKU through research, support, education and advocacy, while ultimately seeking a cure. The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community, and industry partners to make a difference in the lives of people with PKU.
About PKU (Phenylketonuria):
Phenylketonuria (known as PKU) is an inherited brain-threatening metabolic disease where there is an increased level of a substance called phenylalanine (Phe) in the blood. Phe is a building block of protein and is found in most foods. This is important because the damage caused by toxic levels of Phe in the first few years of life is irreversible.
Children with PKU can eat no more than 6 grams of protein in a day – the equivalent of an egg. Without prohibitively expensive medical food, special formula, and constant monitoring with blood tests, these children’s Phe levels would rise to high levels in the blood causing irreversible brain damage and neurological complications in a short period of time.
The National PKU Alliance (NPKUA) was formed 15 years ago to fight for a better quality of life for those living with PKU, and fund research for possible treatments. At that time, there was little to no ongoing research or any viable pathways for a cure in our children’s lifetime. Today, there are two FDA-approved therapies on the market, but not all people with PKU can benefit from these therapies.
Today’s therapies and ground-breaking research is a direct result of philanthropic donations during the past 15 years. Because PKU is a very rare disease, it is considered an orphan disease and the burden of funding therapies and, ultimately, a cure falls on those PKU families and their generous network of friends, relatives, neighbors, and colleagues.
In the last 15 years, we have just scratched the surface in the science and innovation arenas. With your help, our fundraising efforts will usher in a new generation of therapies and ultimately a cure.
