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About NPKUA

We’re here to offer help and hope.

Our mission is to improve the lives of individuals with PKU, pursue a cure by expanding research and provide education and support to individuals living with PKU and their caregivers.

Our goal is to serve as the go-to resource for all PKU needs at all life stages.

Together we’re understood.
Together we’re strong.
Together we’ll fund and find a cure.

History and Milestones

The NPKUA was founded in 2008 after parents and grandparents formed a working group in 2006 to create the beginnings of the National PKU Alliance (NPKUA) to unite local and regional groups throughout the U.S.

Soon after the inception of the NPKUA, the Scientific Advisory Board (SAB) formed in 2009 and proudly approved the first NPKUA-funded grant for Denise Ney on her work on GMP usage in medical foods in 2010. During this same year, the NPKUA hosted its first conference, “High Hopes.”

In 2015, the NPKUA began hosting Lifting the Limits (LTL) for PKU as a fundraising campaign to support PKU research funding. Since this first event, the NPKUA has since hosted over 10 LTLs and raised over $4.4million for PKU research.

A top priority of the NPKUA has always been centered around research, and in 2015 the organization conducted its first national survey to assess current health status and unmet medical needs in the community, leading to an important publication that is still frequently cited today. Only a few years later, the NPKUA launched the PKU Patient Registry in 2017 to accelerate PKU research and gather data into the lived experience of PKU.

In the 15 years since the inception of the NPKUA, the organization has supported numerous successful LTL fundraising events, conferences, and internal support programs, such as launching the Mentor Program and creating a group of affiliate organizations across the United States. The organization has remained steadfast in its support of research endeavors through regular communications with emerging industry and academic leaders at the forefront of PKU research and investing into the PKU Patent Registry, including launching a sponsored genetic testing program to provide no-cost genetic testing to individuals with PKU.

Meet our Board of Directors

Rhonda Connolly

President

Beth Aselage

Vice President

Dan Lazzari

Treasurer

Alison Reynolds

Secretary

Susan Berry, M.D.

Lillian Isabella

Heidi Maxfield

David Mickle

Adam Sherman

Chuck Bucklar

Christina Love

Mark E. Gralen

Michael A. Finkel, DO, MPH

Meet our staff

Catherine Warren

Executive Director

Sarah Gallagher

Director of Community Engagement

Blair Giannini

Director of Events

Susie Gray

Director of Development

Elaina Jurecki, M.S., R.D.

Director of Research Development

Morgan Jurgens

Staff Operations

Kelsey McQueen

Kelsey McQueen, M.S., G.C.

PKU Patient Registry Coordinator

Financial & Annual Impact Reports

Because of the generosity of our donors, like you, we’re able to help improve the lives of people affected by PKU and get closer to our mission of finding a cure.

We appreciate all that you do for us, and we want you to see that we are responsible and thoughtful when it comes to our finances and spending. We invite you to look through our audited financial statements, Form 990s, and impact reports.

Thank you for being a big part of our success and know that your continued support means the world to us.

2023 Financial Statement
2023 Form 990
2023 NPKUA Impact Report
2022 Financial Statement
2022 Form 990
2022 NPKUA Impact Report
2021 Financial Statement
2021 Form 990