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Kif1aorg Inc

EIN 82-0714729 · New York, NY

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

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceGood83 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

KIF1A.ORG IS A GLOBAL COMMUNITY DEDICATED TO IMPROVING THE LIVES OF THOSE AFFECTED BY KIF1A-ASSOCIATED NEUROLOGICAL DISORDERS AND ACCELERATING RESEARCH TO FIND A CURE.

Income
$294,585
Spending
$149,137
Spent on programs
75%
Reserves
17.6 months of spending
Largest source of income
donations and private grants, 99%
Employees
1
Volunteers
10

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 100 out of 100. Higher than 91% of charities in its peer group (mental health, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 17.6 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 49% of income.

  • Income trend

    15 of 15

    Income rose 28% on the year before.

  • Spending floor

    15 of 15

    75% of spending went to programs and raising each dollar of donations cost 2 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Good: 83 out of 100. Higher than 67% of charities in its peer group (mental health, $250k to $1m).

  • Independent board

    25 of 25

    5 of 5 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

    0 of 7

    Reports no 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, 2024, 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. $38,258 spent. FAMILY & SCIENTIFIC ENGAGEMENT CONFERENCE - KIF1A.ORG HOSTS A BIENNIAL FAMILY AND SCIENTIFIC ENGAGEMENT CONFERENCE TO UNITE THE GLOBAL KAND COMMUNITY-INCLUDING PATIENTS, FAMILIES, RESEARCHERS, CLINICIANS, AND INDUSTRY PARTNERS-FOR A COLLABORATIVE EXCHANGE OF KNOWLEDGE, RESEARCH UPDATES, AND LIVED EXPERIENCES. THIS FLAGSHIP EVENT FOSTERS MEANINGFUL CONNECTIONS, DRIVES CROSS-DISCIPLINARY COLLABORATION, AND AMPLIFIES THE PATIENT VOICE IN THE SEARCH FOR TREATMENTS AND A CURE. ALTHOUGH 2024 WAS AN OFF YEAR FOR THE LIVE CONFERENCE, THE ORGANIZATION FOCUSED ON POST-CONFERENCE ENGAGEMENT STEMMING FROM THE 2023 EVENT AND LAID CRITICAL GROUNDWORK FOR THE 2025 GATHERING. ONGOING ACTIVITIES INCLUDED FOLLOW-UP SESSIONS, PLANNING MEETINGS, COMMUNITY FEEDBACK INITIATIVES, AND SPEAKER COORDINATION. THESE EFFORTS ENSURE THE CONFERENCE REMAINS A POWERFUL CATALYST FOR RESEARCH PROGRESS AND A VITAL SOURCE OF SUPPORT AND EMPOWERMENT FOR FAMILIES AFFECTED BY KAND.
  2. $26,729 spent. COMMUNITY & FAMILY SUPPORT - KIF1A.ORG'S COMMUNITY AND FAMILY SUPPORT PROGRAM EMPOWERS INDIVIDUALS AFFECTED BY KIF1A ASSOCIATED NEUROLOGICAL DISORDER (KAND) THROUGH DIRECT SUPPORT, RESOURCE DEVELOPMENT, AND FAMILY-CENTERED INITIATIVES. THIS PROGRAM PROVIDES A VITAL SUPPORT NETWORK FOR PATIENTS, CAREGIVERS, AND ADVOCATES NAVIGATING THE CHALLENGES OF A RARE NEURODEGENERATIVE DISEASE. THROUGH VIRTUAL MEETUPS, EDUCATIONAL WEBINARS, PERSONALIZED FAMILY OUTREACH, AND AN ONLINE COMMUNITY PLATFORM, KIF1A.ORG FOSTERS MEANINGFUL CONNECTIONS AMONG FAMILIES AROUND THE WORLD. THE PROGRAM ALSO PROVIDES GUIDANCE ON CLINICAL CARE, ACCESS TO RESEARCH OPPORTUNITIES, AND EMOTIONAL SUPPORT RESOURCES. BY AMPLIFYING THE VOICES OF PATIENTS AND CAREGIVERS, THE COMMUNITY AND FAMILY SUPPORT PROGRAM HELPS BUILD RESILIENCE, REDUCE ISOLATION, AND ENSURE THAT EVERY KAND FAMILY IS EQUIPPED WITH THE TOOLS AND INFORMATION NEEDED TO FACE THE COMPLEX REALITIES OF THIS ULTRA-RARE DISORDER.
  3. $18,839 spent. MEDICAL RESEARCH AND DEVELOPMENT - KIF1A.ORG'S MEDICAL RESEARCH AND DEVELOPMENT PROGRAM ACCELERATES DISCOVERY AND THERAPEUTIC DEVELOPMENT FOR KIF1A ASSOCIATED NEUROLOGICAL DISORDER (KAND) BY DRIVING SCIENTIFIC COLLABORATION AND PATIENT-CENTERED RESEARCH. LED BY OUR CHIEF SCIENCE OFFICER, THIS PROGRAM FACILITATES COORDINATION AMONG RESEARCHERS, CLINICIANS, AND INSTITUTIONS AROUND THE WORLD TO ALIGN EFFORTS, SHARE DATA AND RESOURCES, AND ADVANCE UNDERSTANDING OF KIF1A-RELATED SYMPTOMS. THROUGH STRATEGIC PARTNERSHIPS, RESEARCH GRANTS, AND CONVENING GLOBAL EXPERTS, THE PROGRAM HELPS IDENTIFY AND PRIORITIZE HIGH-IMPACT RESEARCH PROJECTS. IMPORTANTLY, KIF1A.ORG ENSURES THAT THE PATIENT AND CAREGIVER PERSPECTIVE REMAINS CENTRAL IN ALL SCIENTIFIC DISCUSSIONS, FROM BASIC RESEARCH TO CLINICAL TRIAL DESIGN. BY BRIDGING THE GAP BETWEEN FAMILIES AND THE SCIENTIFIC COMMUNITY, THE MEDICAL RESEARCH AND DEVELOPMENT PROGRAM FOSTERS A COLLABORATIVE ECOSYSTEM DEDICATED TO DELIVERING MEANINGFUL OUTCOMES FOR THOSE AFFECTED BY KAND.
  4. $27,736 spent. REIMBURSEMENT OTHER PROGRAMS - GENERAL AND CONFERENCE ATTENDANCE.

Source: Form 990 for the year ending December 31, 2024, 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 September 7, 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 September 30, 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 September 10, 2026.

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

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 2026.

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

    Recognized by the IRS since March 2017.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 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 October 7, 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.