Organizations Filed Purposes:
National PKU News primary purpose is to disseminate information to patients and their families as well as to professionals involved in the treatment of the disease PKU.
HowMuchPhe.org: Online subscription-based database for PKU diet management. Allows users to look up PHE values for foods and record and track their intake, blood-PHE levels, and other test results. For personal use only. 1919 subscribers, ~1200 of whom use the service daily
Development of printed educational materials for children and adults with PKU, including "pocket" books that contain phe values and guides for better maintaining diet.
Responding to community's requests for support on social media and via email: Inquiries about how to find clinics, how to work with food companies, how to find additional resources for PKU support. 10-12 requests/week for a total of 500-750 persons served
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Sarah Chamberlin | Executive Director | 50 | $85,000 |
| Jennifer Beazer | Dietitian | 30 | $46,500 |
| Adrian Alan Mays | Treasurer | 2 | $0 |
| Elliot Jeb Haber | President | 5 | $0 |
| Brenda Winiarski | Board Member | 3 | $0 |
| Laurie Bernstein | Board Member | 0 | $0 |
| Michelle Hobbs | Staff Dietitian | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202110469349302101_public.xml