The Yaya Foundation for 4H Leukodystophy

Nonprofit profile at a glance

EIN
823888108
IRS 990 coverage
2020–2024
Forms available
Form 990 2024, Form 990-EZ 2019
Location
Minneapolis, MN, USA
Phone
3472687066
Rating
65
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$284,117
Expenses
$410,790
Assets
$323,449
Liabilities
$30,718

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

14 people listed

Executive titles in this filing

  • Benjamin Smith (Executive Director)

Highest reported compensation

  • Benjamin Smith (Executive Director): $150,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Founded and launched the 4H Leukodystrophy Collaboration Network (4HLCN), a global, cross-functional collaboration of patients, families, researchers, and clinicians dedicated to advancing therapeutic discovery that will enable people affected by 4H (POLR3-Related) Leukodystrophy to live longer, better lives.

What it reported doing in 2024

Launched #4HLFamilies, comprised of programming and supportive resources for families affected by 4H Leukodystrophy. #4HLFamilies aims to connect affected families so that they can share experiences and best practices and provide emotional and educational support for one another, provide educational resources for families and their healthcare providers in order to streamline and improve the standard of care for patients affected by 4H Leukodystrophy, and to share patient stories to raise awareness of the disease. The Yaya Foundation held several videoconferences attended by families and children affected by 4H and began creation of a suite of educational resources for newly diagnosed families and their healthcare providers aimed at streamlining and improving their care.

Operating model

Revenue model
Donor-supported. 90% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - The filed numbers largely add up and program spending has grown recently. Some filing-based governance responses are negative or unanswered and a relatively small share of total spending goes to programs.

Rating breakdown

  • Financial Efficiency: 58
  • Transparency & Controls: 81
  • Accountability: 59
  • Sustainability: 17
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 72.6%; rating input score 73
  • Program expense ratio: 50%; rating input score 50
  • Fundraising efficiency: $2.01 raised per $1 spent on fundraising; rating input score 9; 9th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 85.7%; rating input score 86; 3rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 92.3%; rating input score 92; 25th percentile among comparable filings
  • Governance controls: 1 of 8 controls in place; rating input score 12
    • Conflict-of-interest policy: Fail
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: Fail
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Fail
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: -44.6%; rating input score 6; 6th percentile among comparable filings
  • Total-asset coverage ratio: 0.79; rating input score 34; 34th percentile among comparable filings
  • Liabilities to assets ratio: 0.09; rating input score 27; 27th percentile among comparable filings
  • Officer compensation ratio: 36.5%; rating input score 8; 8th percentile among comparable filings

Growth

  • Program expense growth: 4.8% per year; rating input score 100; 53rd percentile among comparable filings
  • Revenue growth: 6.6% per year; rating input score 100; 60th percentile among comparable filings
  • Asset growth: 7.3% per year; rating input score 100; 57th percentile among comparable filings

Details

  • Where the money goes: 72.6% of revenue deployed · 50% of spending went to programs
  • Governance: 12 of 13 board members independent · 1 of 8 filing controls reported
  • Programs: 2 filed program accomplishments · $205K in reported program spending
  • Leadership: top reported pay $150K · 14 people listed
  • Consistency: 23 of 24 current checks pass · 1 finding to review
  • Schedules: 5 filed schedules · includes major donors
  • Filing history: 5 filing years from 2020 to 2024
  • Contacts: How to reach this organization
  • Money network: 1 filed money-flow record
  • 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.

  • High — Accountability: Governance controls: 6 of 7 not reported.
  • Review — Financial Efficiency: Program expense ratio scored 50/100.
  • High — Financial Efficiency: Fundraising efficiency scored 9/100.
  • High — Sustainability: Operating margin scored 6/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • Moderate — Sustainability: Total-asset coverage ratio scored 34/100.
  • High — Sustainability: Officer compensation ratio scored 8/100.
  • High — Sustainability: Liabilities to assets ratio scored 27/100.