The Jed Ian Taxel Foundation for Rare Cancer Research Inc
Nonprofit profile at a glance
- EIN
- 862610819
- IRS 990 coverage
- 2021–2025
- Forms available
- Form 990 2025
- Location
- Park City, UT, USA
- Phone
- 9146714766
- Rating
- 74
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Health
Reported finances
- Revenue
- $420,348
- Expenses
- $270,754
- Assets
- $295,255
- Liabilities
- $41,860
Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.
Leadership & pay
12 people listed
Executive titles in this filing
- Harmony Knutsen (President/CEO)
Highest reported compensation
- Harmony Knutsen (President/CEO): $35,000 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
To inspire and empower scientific breakthroughs, clinical trials and improved treatments which change lives and enable better outcomes for rare cancer patients and their families.
What it reported doing in 2025
The Alliance for Rare Cancers (ARC is a program of the Jedi Rare Cancer Foundation. Launched in 2024 as a collaborative consortium of researchers, clinicians, patients, and advocates across the rare cancer innovation system, ARC provides a venue for rare cancer stakeholders to co-create and implement large-scale collaborative partnerships across multiple rare tumor types to accelerate progress for patients. Following the completion of a strategic planning process in 2024 and pilot project development throughout 2025, ARC has moved from concept to execution. In partnership with Case Comprehensive Cancer Center (Case CCC) and the Rare Cancer Research Foundation (RCRF), ARC has initiated an ambitious two-year pilot program to create a scalable national platform for deep characterization of rare tumors. Supported by $1 million catalytic funding from the Chan Zuckerberg Initiative's Biohub and ongoing support from ARC founding sponsor the Jedi Rare Cancer Foundation, the collaboration aims to transform rare cancer research by combining advanced translational science with patient-powered data collection to accelerate the development of breakthrough therapies. The goal of this initiative is to ensure patients and physicians can access emerging research insights, navigate treatment options and directly benefit from scientific progress that translates research insights into care decisions. Jedi Rare Cancer Foundation funding continues to advance Phase Two of CURE: The Rare Cancer Initiative at Case Comprehensive Cancer Center by expanding deep tumor profiling, functional modeling, and translational testing of rare cancer patient biopsies. In development is an AI-based biomarker diagnostic tool that will deliver a scalable, cost-effective path from discovery to actionable better treatment approaches for rare cancer patients. This initiative represents the most comprehensive and innovative bedside-to-bench-to-bedside effort in rare cancer research to date and will catalyze innovation among research institutions to accelerate scientific discovery and transform rare cancer treatment.
Operating model
- Revenue model
- Donor-supported. 96% of the money available for current operations came from contributions and gifts.
- Distribution model
- Direct operator. The filing allocates 90% 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.
- Includes noncash contributions: Reported contributions include donated property or goods.
The verdict
SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and fundraising costs are high for each dollar raised.
Rating breakdown
- Financial Efficiency: 55
- Transparency & Controls: 94
- Accountability: 85
- Sustainability: 57
- Growth: 80
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 47.8%; rating input score 48
- Program expense ratio: 71%; rating input score 71
- Fundraising efficiency: $13.46 raised per $1 spent on fundraising; rating input score 45; 45th percentile among comparable filings
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
- Pay-setting controls: Limited
- Foreign activity oversight: Limited
- Grant itemization coverage: 100%; rating input score 100; 81st percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 91.7%; rating input score 92; 27th percentile among comparable filings
- Governance controls: 6 of 8 controls in place; rating input score 75
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Pass
- CEO compensation review process: Fail
- 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: Fail
Sustainability
- Operating margin: 35.6%; rating input score 84; 84th percentile among comparable filings
- Total-asset coverage ratio: 1.09; rating input score 43; 43rd percentile among comparable filings
- Liabilities to assets ratio: 0.14; rating input score 19; 19th percentile among comparable filings
- Officer compensation ratio: 12.9%; rating input score 25; 25th percentile among comparable filings
Growth
- Program expense growth: 19.9% per year; rating input score 100; 83rd percentile among comparable filings
- Revenue growth: 1.8% per year; rating input score 100; 29th percentile among comparable filings
- Asset growth: -3.9% per year; rating input score 0; 11th percentile among comparable filings
Details
- Where the money goes: 47.8% of revenue deployed · 71% of spending went to programs
- Governance: 11 of 12 board members independent · 6 of 8 filing controls reported
- Programs: 1 filed program accomplishment · $192K in reported program spending
- Leadership: top reported pay $35K · 12 people listed
- Highest-paid contractors: 1 contractor listed · $121K reported
- Consistency: 23 of 23 current checks pass
- Schedules: 4 filed schedules · includes major donors and grants
- Filing history: 5 filing years from 2021 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.
Key Signals
Signals prioritize questions for review. They are not findings of misconduct.
- Moderate — Financial Efficiency: Mission deployment rate scored 48/100.
- Moderate — Financial Efficiency: Fundraising efficiency scored 45/100.
- Review — Accountability: Governance controls: 2 of 8 not reported.
- High — Growth: Asset growth scored 0/100.
- Moderate — Sustainability: Total-asset coverage ratio scored 43/100.
- High — Sustainability: Liabilities to assets ratio scored 19/100.
- High — Sustainability: Officer compensation ratio scored 25/100.