Helen's Pink Sky Foundation

Nonprofit profile at a glance

EIN
334330209
IRS 990 coverage
2025–2025
Forms available
Form 990 2025
Location
Minnetrista, MN, USA
Phone
6128681070
Rating
70
Verdict
SUPPORTED
Rating confidence
Moderate

Official website

Reported finances

Revenue
$2,248,524
Expenses
$1,189,032
Assets
$1,059,492
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

7 people listed

Executive titles in this filing

  • MARK SCHNEIDER (PRESIDENT)
  • DAN BORN (VICE-PRESIDENT)
  • STEPHANIE BORN (CO-VICE PRESIDENT)
  • NICK SCHNEIDER (CO-VICE PRESIDENT)

People named in this filing

  • MARK SCHNEIDER (PRESIDENT)
  • DAN BORN (VICE-PRESIDENT)
  • STEPHANIE BORN (CO-VICE PRESIDENT)

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

Helen's pink sky foundation is committed to advocacy, research and care for those with batten disease & cln2. Through our platform, you can stay updated on helen's journey, contribute to the cause, and be a part of our growing community dedicated to supporting affected families.

What it reported doing in 2025

Helen's pink sky foundation (hope4helen) advanced its mission to accelerate research, advocacy, and awareness for cln2 batten disease by funding high-impact scientific initiatives aimed at developing effective treatments and ultimately a cure. To further these goals, the foundation awarded $1,187,000 in research grants to leading institutions.the foundation also continued its broader mission pillars: advocacy, awareness, and family support by educating the public about cln2 batten disease, engaging with affected families, and promoting scientific understanding of rare pediatric neurodegenerative diseases. These efforts collectively advance the foundation's purpose: to bring hope, progress, and ultimately a cure for children like helen.

Operating model

Revenue model
Donor-supported. 95% of the money available for current operations came from contributions and gifts.
Distribution model
Grant intermediary. The nonprofit sent 100% of its reported program spending out as grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - The filed numbers largely add up and a large share of total spending goes to programs. A relatively small share of available resources goes toward mission work and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 63
  • Transparency & Controls: 94
  • Accountability: 64
  • Sustainability: 73
  • Growth: NotEnoughData

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 52.8%; rating input score 53
  • Program expense ratio: 99.8%; rating input score 100
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 75th 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: 1 of 7 controls in place; rating input score 14
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Fail
    • Board meeting minutes documented: Fail
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 47.1%; rating input score 90; 90th percentile among comparable filings
  • Total-asset coverage ratio: 0.89; rating input score 30; 30th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 96; 96th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 90; 90th percentile among comparable filings

Growth

  • Program expense growth: Limited
  • Revenue growth: Limited
  • Asset growth: Limited

Details

  • Where the money goes: 52.8% of revenue deployed · 99.8% of spending went to programs
  • Governance: 7 of 7 board members independent · 1 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $1.2M in reported program spending
  • Leadership: top reported pay $0 · 7 people listed
  • Consistency: 16 of 16 current checks pass
  • Schedules: 6 filed schedules · includes major donors and grants
  • Contacts: How to reach this organization
  • Money network: 3 filed money-flow records
  • Related organizations: 3 filed related-organization links
  • 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.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Review — Financial Efficiency: Mission deployment rate scored 53/100.
  • High — Accountability: Governance controls: 5 of 6 not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 30/100.