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Rob and Alison Piziali

Creating a Better Future for Their Daughter and Others Like Her

Alison Piziali had the idea that she could make a difference for her young daughter, Tia, and other children afflicted with phenylketonuria (PKU) by raising money to support research in a Scripps Research Institute lab.

After Tia was diagnosed with PKU soon after birth, Alison quickly become aware of the limitations of the current treatment strategy for the disease. Children with PKU — an inherited metabolic disorder — can't convert phenylalanine, a part of a protein, to tyrosine in the liver. Phenylalanine thus becomes toxic to the central nervous system, especially the brain.

Since phenylalanine occurs in meat, fish, all dairy, flour, and even fruits and vegetables, children with PKU must go through life on a severely restricted diet and must be monitored by frequent blood tests. Limiting phenylalanine in the diet is so difficult that many victims fail to avoid behavioral and intellectual problems as adolescents and adults. Since drug development takes so long, Alison knew she needed to act immediately if she wanted to see new therapeutics available for Tia when she became a teenager.

Alison and her husband Rob Piziali wanted a better fate for their daughter. That's when they learned that Scripps Research Professor Raymond Stevens was working with BioMarin Pharmaceuticals on a potential treatment strategy for PKU and similar diseases. This research showed the promise of using natural cofactors to provide some protection against the toxic effects of phenylalanine for patients with mild PKU and an enzyme replacement strategy for patients with severe PKU.

Alison hit on the idea of throwing an event, which she dubbed "Tuxes for Tia and All People with PKU," in San Francisco to raise money for the Stevens lab and to speed investigations toward new treatments. The initial goal was to raise $75,000. Alison also hoped the event would raise awareness about the disease.

The response to the event was good — very good. In fact, Alison soon realized that the room she had booked wouldn't hold all the people who wanted to attend. She changed the venue to the Ritz–Carlton.

In the meantime, Alison's parents, Richard and Virginia Michaux, stepped up to support the cause, donating $75,000 for a fellowship in the Stevens lab. Over and above that contribution, they gave $30,000 to support the lab's PKU research. And Alison's in-laws, Robert and Kathy Piziali, gave another $25,000.

The date of the event arrived, and 376 guests from 17 states enjoyed an elegant evening of cocktails and dancing. When the proceeds were tallied (without counting the prior Michaux and Piziali gifts), they totaled more than $300,000.

Stevens, for his part, calls the fundraising event "incredible" and states that it has unequivocally accelerated his work on PKU therapeutic development. "[Tuxes for Tia] was one of those lifetime events that goes beyond words and that I will always remember with absolute amazement," he says. "Now it is up to us to accomplish our task of developing PKU therapeutics on a similar level."

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It's amazing where an idea can take you.