Skip to the page content
Your donations
Passes our checks

Lhon Collective

EIN 88-2257719 · San Diego, CA

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceFair69 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

TO ACCELERATE PROGRESS TOWARD A CURE FOR LEBER HEREDITARY OPTIC NEUROPATHY (LHON) WHILE IMPROVING THE LIVES OF PEOPLE LIVING WITH LHON.

Income
$335,721
Spending
$181,097
Spent on programs
100%
Reserves
17.2 months of spending
Largest source of income
donations and private grants, 100%
Employees
0
Volunteers
0

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 100 out of 100. Higher than 81% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 17.2 months of spending.

  • Debt

    20 of 20

    It owes 0% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 46% of income.

  • Income trend

    15 of 15

    Income rose 53% on the year before.

  • Spending floor

    15 of 15

    100% of spending went to programs and raising each dollar of donations cost 0 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Fair: 69 out of 100. Higher than 39% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    5 of 25

    0 of 3 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Independent check of accounts

    6 of 15

    Its accounts were not audited or reviewed by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (4)
  1. $127,677 spent. LHON COLLECTIVE WORKED WITH THE MILKEN FOUNDATION SPARC TO CREATE AN ONGOING RESEARCH IN PROGRESS SEMINAR SERIES FOR RESEARCHERS TO DISCUSS NEW AND INNOVATIVE SCIENTIFIC APPROACHES TO THIS RARE DISEASE AND HEAR PRESENTATIONS FROM COLLEAGUES IN THE FIELD TO EXPAND THE WORKING KNOWLEDGE AND COLLABORATIONS FOR FUTURE SCIENTIFIC COLLABORATIONS. LHON AND SPARC ALSO FACILITATED A RESEARCH RESOURCE WORKING GROUP (RRWG) FOR A GROUP OF LHON RESEARCHERS TO COLLABORATE ON AN EVALUATION OF CURRENT, ACCESSIBLE SCIENTIFIC IN VIVO, IN VITRO AND IN SILICO MODELS FOR USE IN THE RESEARCH FOR LHON AND IDENTIFY WHAT MODELS NEED TO BE DEVELOPED FOR FURTHER SCIENTIFIC PROGRESSION FOR THIS RARE DISEASE.
  2. $40,140 spent. 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.
  3. $7,181 spent. IN PARTNERSHIP WITH CARLISI CREATIVE, LHON COLLECTIVE DEVELOPED AUDIO-DESCRIBED, ACCESSIBLE EDUCATIONAL VIDEO MATERIALS TO SCIENTIFICALLY EXPLAIN LHON. THESE MATERIALS DISSEMINATE INFORMATION TO THE COMMUNITY AT LARGE, INCLUDING FUNDERS, THE PATIENT COMMUNITY AND THEIR FAMILY AND FRIENDS, AND TO OTHER CLINICIAN RESEARCHERS TO BETTER UNDERSTAND OPPORTUNITIES FOR SCIENTIFIC ADVANCEMENT FOR THE RARE DISEASE OF LHON.
  4. $5,663 spent. LHON COLLECTIVE PURSUED INVESTMENT IN SCIENTIFIC PROGRESS FOR LHON BY CO-FUNDING A YOUNG INVESTIGATOR WORKING IN THE SADUN LAB AT THE UNIVERSITY OF CALIFORNIA, LOS ANGELES (UCLA) WITH THE INTERNATIONAL FOUNDATION OF OPTIC NERVE DISORDERS (IFOND). THE INVESTIGATOR FOCUSES ON THE RARE DISEASE OF LHON. THE COLLECTIVE ALSO ESTABLISHED A FORMAL RELATIONSHIP WITH COMBINEDBRAIN FOR AN LHON-SPECIFIC BIOREPOSITORY.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since January 2023.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.