Lhon Collective
Nonprofit profile at a glance
- EIN
- 882257719
- IRS 990 coverage
- 2024–2025
- Forms available
- Form 990 2025, Form 990-EZ 2023, Form 990-N 2022
- Location
- San Diego, CA, USA
- Phone
- 2014783537
- Rating
- 68
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Specifically Named Diseases
Reported finances
- Revenue
- $335,721
- Expenses
- $181,097
- Assets
- $259,796
- Liabilities
- $0
Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.
Leadership & pay
3 people listed
Executive titles in this filing
- MALINDA MARSH (CEO)
People named in this filing
- MALINDA MARSH (CEO)
- CHRIS MARSH (SECRETARY)
- ALISON POINCENOT (CFO)
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
To accelerate progress toward a cure for leber hereditary optic neuropathy (lhon) while improving the lives of people living with lhon.
What it reported doing in 2025
Lhon collective hosted an lhon conference as a part of the overall patient conference held with the united mitochondrial disease foundation. This brought 150 lhon community members together to learn about the most recent science for lhon, create community and build skills and independence for those newly vision impaired from lhon. 33% of those who attended the conference were lhon vision impaired, 33% were spouses or significant others, and the last 33% of the attendees included researchers, clinicians, bio pharma, and family and friends of those who have experienced lhon vision loss. Lhon collective also built awareness through collaboration with other vision disorder communities to represent a joint vision consortium presence at the association of research in vision and ophthalmology (arvo) conference.
Operating model
- Revenue model
- Donor-supported. 100% of the money available for current operations came from contributions and gifts.
- Distribution model
- Grant intermediary. The nonprofit sent 95% 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 a relatively small share of voting board members are independent.
Rating breakdown
- Financial Efficiency: 62
- Transparency & Controls: 94
- Accountability: 30
- Sustainability: 74
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 51.8%; rating input score 52
- Program expense ratio: 99.8%; rating input score 100
- Fundraising efficiency: Limited
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: 99.4%; rating input score 99; 61st 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; 8th 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: Missing
- Independent financial-statement audit: Fail
Sustainability
- Operating margin: 46.1%; rating input score 89; 89th percentile among comparable filings
- Total-asset coverage ratio: 1.43; rating input score 50; 50th percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 77; 77th percentile among comparable filings
- Officer compensation ratio: 0%; rating input score 67; 67th percentile among comparable filings
Growth
- Program expense growth: 51.4% per year; rating input score 100; 95th percentile among comparable filings
- Revenue growth: 61.6% per year; rating input score 100; 98th percentile among comparable filings
- Asset growth: 99.3% per year; rating input score 100; 99th percentile among comparable filings
Details
- Where the money goes: 51.8% of revenue deployed · 99.8% of spending went to programs
- Governance: 0 of 3 board members independent · 5 of 7 filing controls reported
- Programs: 4 filed program accomplishments · $181K in reported program spending
- Leadership: top reported pay $0 · 3 people listed
- Consistency: 17 of 17 current checks pass
- Schedules: 6 filed schedules · includes major donors and grants
- Filing history: 2 filing years from 2024 to 2025
- Contacts: How to reach this organization
- Money network: 4 filed money-flow records
- Related organizations: 4 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 52/100.
- High — Accountability: Independent voting board scored 0/100.
- Review — Accountability: Governance controls: Independent financial-statement audit not reported.
- Review — Sustainability: Total-asset coverage ratio scored 50/100.