# National PKU Alliance

National PKU Alliance is a Foundation based in Washington, United States.

## Overview

- **Organization type:** Foundation
- **Headquarters:** Washington, United States
- **Region:** North America
- **Address:** 1802 Vernon Street NW PMB2389, Washington, DC 20009, United States
- **Founded:** 2008
- **Assets under management:** Undisclosed
- **Website:** npkua.org
- **LinkedIn:** https://www.linkedin.com/company/national-pku-alliance

## Regulatory record

- **Reports private funds:** No

## About

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## Sectors

- Healthcare Services

## People

- Rhonda Connolly — President
- Catherine Warren — Executive Director
- Mark E. Gralen — Vice President
- Dan Lazzari — Treasurer
- Alison Reynolds — Secretary
- Elaina Jurecki, M.S., R.D. — Director of Research Development
- Kelsey McQueen, M.S., C.G.C. — Associate Director of Research Development

## Questions

### Who directs the NPKUA's research funding decisions?

Elaina Jurecki serves as Director of Research Development, supported by Associate Director Kelsey McQueen. The organization's Scientific Advisory Board, established in 2009, reviews and approves grant proposals. Jurecki brings 15 years of industry experience from BioMarin Pharmaceutical and 20 years as a regional metabolic coordinator for Kaiser Northern California.

### How does the NPKUA source its research funding?

The primary funding source is the Lifting the Limits for PKU fundraising gala series, launched in 2015. The organization also accepts direct individual and corporate donations. Audited financial statements published on the NPKUA website detail annual revenue and program spending.

### What is the PKU Patient Registry and why does it matter to drug developers?

Launched in 2017, the Registry aggregates longitudinal health data and patient-reported outcomes from individuals living with PKU. Biopharmaceutical companies use this data to understand disease progression, identify clinical-trial endpoints, and recruit participants. The NPKUA also runs a sponsored genetic testing program to expand the Registry's data layer.

### Which companies in the PKU therapeutic space interact with the NPKUA?

Several board members have held senior roles at BioMarin Pharmaceutical, which markets Kuvan and Palynziq for PKU. The Alliance consults for biotech organizations developing metabolic-genetic treatments, though it does not publicly list specific corporate partners. Its Scientific Advisory Board and Registry serve as common touchpoints for drug developers.

### Does the NPKUA fund early-stage academic research or only clinical-stage programs?

The Alliance funds early-stage translational research. Its first grant in 2010 supported Denise Ney's work on GMP usage in medical foods. Subsequent grants have targeted preclinical and clinical projects through an open, SAB-reviewed process.

### How does the NPKUA's governance separate fundraising from research grant-making?

A board of directors with legal, financial, and rare-disease drug-development expertise provides fiduciary oversight. Day-to-day development and fundraising are managed by Susie Gray, while research development is managed independently by Elaina Jurecki. The Scientific Advisory Board provides an additional, external review layer for grants.

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Last updated: 2026-06-03T20:00:00.000Z

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