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Ftd Disorders Registry LLC

EIN 47-3601782 · Kng of Prussa, PA

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

LegitimacyPassesRegistration and standingFinancial healthGood83 out of 100GovernanceGood70 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE REGISTRY'S MISSION IS TO FACILITATE RESEARCH AND ADVANCE RESEARCH TO ACCELERATE TREATMENT DEVELOPMENT FOR ALL TYPES OF FTD, A DEVASTATING NEURODEGENERATIVE DISEASE THAT STRIKES PEOPLE IN THE PRIME OF LIFE AND FOR WHICH, CURRENTLY, THERE IS NO CURE.

Income
$871,164
Spending
$892,503
Spent on programs
71%
Reserves
23.1 months of spending
Largest source of income
donations and private grants, 66%
Employees
5
Volunteers
0
Highest pay
$350,014, director-aftd member repre

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 83 out of 100. Higher than 51% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 23.1 months of spending.

  • Debt

    20 of 20

    It owes 11% of what it owns.

  • Living within its means

    8 of 15

    Spending exceeded income by 2% of income.

  • Income trend

    5 of 15

    Income fell 16% on the year before.

  • Spending floor

    15 of 15

    71% of spending went to programs and raising each dollar of donations cost 0 cents.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Good: 70 out of 100. Higher than 40% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    0 of 25

    0 of 2 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.

  • Pay set independently

    0 of 5

    Reports no independent review process for its chief executive's pay.

  • Independent check of accounts

    15 of 15

    Its accounts were audited 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 June 30, 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 (1)
  1. $633,262 spent. THE GOALS OF THE REGISTRY ARE TO - EMPOWER THE COMMUNITY OF CAREGIVERS, FAMILY MEMBERS, AND PEOPLE DIAGNOSED WITH FTD - FACILITATE ENROLLMENT FOR FTD CLINICAL RESEARCH AS A CENTRALIZED, INTERNATIONAL DATABASE AND COMMUNICATION HUB- INFORM THE FTD COMMUNITY ON RESEARCH AND PARTICIPATION OPPORTUNITIES AS A TRUSTED, NEUTRAL, SCIENCE-BASED NON-PROFIT VOICE- IMPROVE THE UNDERSTANDING OF FTD AND ITS IMPACT THROUGH SURVEY-BASED, LONGITUDINAL RESEARCH WITH PERSONS DIAGNOSED, FAMILY MEMBERS, AND CAREGIVERS - ENABLE INCLUSIVE AND SECURE RESEARCH DESIGNS AS A RESEARCH PARTNER FOR REMOTE DATA COLLECTION (CONTINUED ON SCHEDULE O)- LEVERAGE RESOURCES AS A PARTNER FOR ALL STAKEHOLDERS - ACADEMIC RESEARCHERS, NON-PROFITS, GOVERNMENT, AND INDUSTRY - WHO SHARE A COMMITMENT TO IMPROVING THE QUALITY OF LIFE OF THOSE AFFECTED BY FTD

Source: Form 990 for the year ending June 30, 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 October 13, 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 June 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 March 2016.

    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 October 21, 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.