PKD FREE BABIES ALLIANCE LTD F/K/A PKD Outreach Foundation Ltd
Nonprofit profile at a glance
- EIN
- 871389001
- IRS 990 coverage
- 2022–2025
- Forms available
- Form 990 2025, Form 990-N 2021
- Location
- Westbury, NY, USA
- Phone
- 5168022094
- Rating
- 69
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Fund Raising and/or Fund Distribution
Reported finances
- Revenue
- $657,659
- Expenses
- $588,428
- Assets
- $1,286,936
- Liabilities
- $32,920
Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.
Leadership & pay
3 people listed
People named in this filing
- Richard Kellner (Founder)
- Marlene Wald (Director)
- Larry Wald (Director)
Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.
Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
PKD Free Babies Alliance, Ltd. (PKD-Free Alliance) is a 501(c)(3) nonprofit organization dedicated to ending Polycystic Kidney Disease (PKD) by using proven approaches to prevent it from being passed down to future generations.
What it reported doing in 2025
PKD Free-Alliance Alliance provides qualified PKD-impacted families with resources, grants, and discounts from top fertility centers nationwide for Preimplantation Genetic Testing (PGT-M) and In Vitro Fertilization (IVF) treatments. Collectively, this allows PKD-impacted individuals to help actualize a PKD-free future.Since the launch of the PKD-Free Babies program in July of 2023, the Alliance has received over 200 grant applications and provided support to 100+ families on their PKD-free journey, with more than 20 PKD-Free Babies welcomed to the world as of February 2026. The PKD-Free Babies Grant Program ranges from $3,000 - $9,000 on a case-by-case basis to cover uninsured costs of preimplantation genetic testing for monogenic disorders (PGT-M) and costs associated with in vitro fertilization (IVF). Approved grant applicants are also eligible for discounts from allied Genetic Testing Laboratories and Fertility Clinics, if they choose to work with those facilities.In addition to helping actualize a PKD-free child for affected families, the Alliance is contributing to long-term reductions in health care costs for patients and their health insurance providers. Each child born free of the disease avoids the need for life-long medical treatment, such as years of dialysis, kidney transplant(s) maintenance, and ongoing specialty care. These outcomes translate into millions of dollars saved by government and/or commercial insurance over time, with annual savings increasing as more families are supported and additional PKD-free children are born, stopping disease transmission to future generations. Each PKD-free birth also reduces burden on the National Waiting list, where over 94,000 individuals are awaiting a life-saving kidney transplant.Over 30 medical centers, fertility clinics, genetic companies, and advocacy organizations have aligned themselves with the Alliance's mission and continue to propel family planning education forward for families impacted by PKD.Key medical centers supporting the Alliance's mission include Columbia University Medical Center, Rogosin Institute, University of Utah Health, and University of Miami Katz Family Division of Nephrology and Hypertension.
Operating model
- Revenue model
- Donor-supported. 95% of the money available for current operations came from contributions and gifts.
- Distribution model
- Hybrid. The nonprofit split its reported program spending across 54% for direct work, and 46% for grants.
- Includes noncash contributions: Reported contributions include donated property or goods.
The verdict
SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. A relatively small share of voting board members are independent and some filing-based governance responses are negative or unanswered.
Rating breakdown
- Financial Efficiency: 85
- Transparency & Controls: 77
- Accountability: 30
- Sustainability: 62
- Growth: 60
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 81.3%; rating input score 81
- Program expense ratio: 95.8%; rating input score 96
- Fundraising efficiency: $45.85 raised per $1 spent on fundraising; rating input score 74; 74th percentile among comparable filings
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
- Pay-setting controls: Limited
- Foreign activity oversight: 1 of 8 controls in place; rating input score 12
- Claims monitoring procedures: Pass
- Requires narrative reports: Limited
- Conducts field audits: Limited
- May suspend future funding: Limited
- Requires financial reports: Limited
- Conducts site visits: Limited
- Requires grant agreements: Limited
- May require repayment: Limited
- Grant itemization coverage: 99.8%; rating input score 100; 54th percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 0%; rating input score 0; 6th percentile among comparable filings
- Governance controls: 5 of 7 controls in place; rating input score 71
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Pass
- CEO compensation review process: NotApplicable
- Other executive compensation review process: NotApplicable
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Fail
- Independent financial-statement audit: Fail
Sustainability
- Operating margin: 10.5%; rating input score 57; 57th percentile among comparable filings
- Total-asset coverage ratio: 2.19; rating input score 67; 67th percentile among comparable filings
- Liabilities to assets ratio: 0.03; rating input score 51; 51st percentile among comparable filings
- Officer compensation ratio: 0%; rating input score 78; 78th percentile among comparable filings
Growth
- Program expense growth: 19% per year; rating input score 100; 78th percentile among comparable filings
- Revenue growth: -18.6% per year; rating input score 0; 1st percentile among comparable filings
- Asset growth: 22.6% per year; rating input score 100; 82nd percentile among comparable filings
Details
- Where the money goes: 81.3% of revenue deployed · 95.8% of spending went to programs
- Governance: 0 of 3 board members independent · 5 of 7 filing controls reported
- Programs: 1 filed program accomplishment · $564K in reported program spending
- Leadership: top reported pay $0 · 3 people listed
- Consistency: 24 of 24 current checks pass
- Schedules: 6 filed schedules · includes major donors, foreign activity, and grants
- Filing history: 4 filing years from 2022 to 2025
- Contacts: How to reach this organization
- Money network: 2 filed money-flow records
- Related organizations: 1 filed related-organization link
- Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
- People: Everyone the filings name, and which of them the filings identify by more than a name.
- Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- High — Accountability: Independent voting board scored 0/100.
- Review — Accountability: Governance controls: 2 of 7 not reported.
- High — Growth: Revenue growth scored 0/100.
- Review — Sustainability: Operating margin scored 57/100.
- Review — Sustainability: Liabilities to assets ratio scored 51/100.