National Pku Alliance Inc

What it reported doing in 2025

Community engagement continues to be a core pillar of the national pku alliance. The community engagement director is responsible for planning and managing programs for the pku community, including a mentoring program, community calls, support kits, maternal pku patient support, advocacy efforts and an affiliate program.the director schedules, manages and attends virtual calls with the community across different pku age groups and pku caregiver types. 48 calls were held in 2025 with 250 attendees.in 2025, the npkua mentor program grew to support over 45 caregivers and individuals with pku through personalized one-on-one mentoring, with mentors connecting virtually and in person to share experiences and develop skills to better assist their mentees.the npkua advocacy committee works alongside members of the broader rare disease community to advance efforts around nutrition, equity and other priorities of the pku community. The committee developed an advocacy media toolkit to help community members share their stories. Staff and advocacy committee volunteers have also responded to the termination of the achdnc (advisory committee on heritable disorders in newborns and children) by calling on constituents, through database-wide email and social media outreach, to sign-on to contact their legislators and share their story and support of nbs. Started a newborn screening video series to be used in september, recognized as newborn screening awareness month. The series raises awareness about the importance of newborn screening, and the critical role of newborn screening in identifying serious conditions that can lead to severe disability or death if left undiagnosed. In total, npkua supported 10 state and federal legislative advocacy efforts.in 2025 npkua provided $34,057 to npkua affiliates to support community events and camps in their regions. During the year, npkua also met one-on-one with individual affiliate leaders to better understand their goals and needs. In 2025, 206 newborn and kindergarten kits were delivered to families welcoming a new baby with pku or supporting a new kindergartener with pku.in 2025, 55 packages of diet-appropriate food were delivered to maternal pku patients to best support their low-protein diet.

Financial Efficiency

• Mission deployment rate: 63.1%; rating input score 63
• Program expense ratio: 76.9%; rating input score 77
• Fundraising efficiency: $9.8 raised per $1 spent on fundraising; rating input score 35; 35th percentile among comparable filings

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
• Pay-setting controls: 2 of 6 controls in place; rating input score 33
  • Compensation committee: Missing
  • Independent consultant: Missing
  • Other Form 990s reviewed: Missing
  • Written employment contract: Missing
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: 3 of 8 controls in place; rating input score 38
  • Claims monitoring procedures: Pass
  • Requires narrative reports: Pass
  • Conducts field audits: Fail
  • May suspend future funding: Fail
  • Requires financial reports: Pass
  • Conducts site visits: Fail
  • Requires grant agreements: Fail
  • May require repayment: Fail
• Grant itemization coverage: 100%; rating input score 100; 49th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 8 of 8 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: NotApplicable
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: 24%; rating input score 77; 77th percentile among comparable filings
• Total-asset coverage ratio: 3.04; rating input score 70; 70th percentile among comparable filings
• Liabilities to assets ratio: 0.06; rating input score 58; 58th percentile among comparable filings
• Officer compensation ratio: 24.5%; rating input score 11; 11th percentile among comparable filings

Growth

• Program expense growth: 7.8% per year; rating input score 100; 51st percentile among comparable filings
• Revenue growth: 7.4% per year; rating input score 100; 54th percentile among comparable filings
• Asset growth: 11.7% per year; rating input score 100; 64th percentile among comparable filings