Alport Syndrome Foundation Inc

Nonprofit profile at a glance

EIN
208237159
IRS 990 coverage
2010–2024
Forms available
Form 990 2024, Form 990-EZ 2011
Location
Scottsdale, AZ, USA
Phone
4808003510
Rating
90
Verdict
STRONG
Rating confidence
Moderate
Sector
Patient Services - Entertainment, Recreation

Reported finances

Revenue
$1,194,735
Expenses
$1,003,948
Assets
$2,817,931
Liabilities
$16,538

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

Leadership & pay

10 people listed

Executive titles in this filing

  • LISA BONEBRAKE (EXECUTIVE DIRECTOR)

Highest reported compensation

  • LISA BONEBRAKE (EXECUTIVE DIRECTOR): $105,000 total reported compensation

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

Overview

Mission

The foundation was created to educate and support patients and families that have been affected by this genetic kidney disease with a goal of funding research, to find more effective treatment protocols and to ultimately find a cure.

What it reported doing in 2024

570 new members joined asf. 527 patients enrolled in the asf alport patient registry. 800 new members joined the asf facebook support group. 89,000 website views. 18,000 asf youtube channel views. Hosted a 2-day in-person meeting for 123 patient/family members, with partial financial assistance provided to 57 individuals for travel. 200 hours of staff time spent meeting virtually with patients/caregivers. Hired a part-time research director to support the pharmaceutical and biotech pipeline. Facilitated 974 patient volunteer hours and 114 clinician volunteer hours. Partnered with enyo pharmaceuticals to provide patient insights into clinical trial design and to share information about the phase-2 alpestria-1 study, which fully enrolled ahead of schedule.

Operating model

Revenue model
Donor-supported. 92% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 65% for direct work, and 35% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Reported officer compensation is a large share of total spending, which may reflect staffing concentration.

Rating breakdown

  • Financial Efficiency: 84
  • Transparency & Controls: 94
  • Accountability: 100
  • Sustainability: 68
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 80.9%; rating input score 81
  • Program expense ratio: 91.3%; rating input score 91
  • Fundraising efficiency: $42.23 raised per $1 spent on fundraising; rating input score 75; 75th 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: Limited
  • Grant itemization coverage: 100%; rating input score 100; 76th 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: 16%; rating input score 71; 71st percentile among comparable filings
  • Total-asset coverage ratio: 2.81; rating input score 74; 74th percentile among comparable filings
  • Liabilities to assets ratio: 0.01; rating input score 72; 72nd percentile among comparable filings
  • Officer compensation ratio: 10.5%; rating input score 35; 35th percentile among comparable filings

Growth

  • Program expense growth: 10% per year; rating input score 100; 63rd percentile among comparable filings
  • Revenue growth: 12% per year; rating input score 100; 72nd percentile among comparable filings
  • Asset growth: 16.3% per year; rating input score 100; 75th percentile among comparable filings

Details

  • Where the money goes: 80.9% of revenue deployed · 91.3% of spending went to programs
  • Governance: 9 of 9 board members independent · 8 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $917K in reported program spending
  • Leadership: top reported pay $105K · 10 people listed
  • Consistency: 31 of 31 current checks pass
  • Schedules: 6 filed schedules · includes major donors and grants
  • Filing history: 14 filing years from 2010 to 2024
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • Related organizations: 2 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.

  • Moderate — Sustainability: Officer compensation ratio scored 35/100.