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International Foundation for Cdkl5 Research

EIN 27-0950477 · Wadsworth, OH

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

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5.

Income
$716,340
Spending
$357,011
Spent on programs
88%
Reserves
32.4 months of spending
Largest source of income
donations and private grants, 100%
Employees
0
Volunteers
12

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 79% of charities in its peer group (philanthropy, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 32.4 months of spending.

  • Debt

    20 of 20

    It owes 1% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 50% of income.

  • Income trend

    15 of 15

    Income rose 12% on the year before.

  • Spending floor

    15 of 15

    88% of spending went to programs and raising each dollar of donations cost 0 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

Strong: 100 out of 100. Higher than 92% of charities in its peer group (philanthropy, $250k to $1m).

  • Independent board

    25 of 25

    8 of 8 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

    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 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 (1)
  1. $313,492 spent. In 2024, cash and noncash contributions were received from numerous individuals, corporations, and foundations. As a result, grants totaling $120,515 were made during 2024 to fund research that will lead to a cure for this very debilitating disease in the near future. The Organizations goals include aggressive research, studies to improve the quality of life for children with CDKL5, and testing of compounds to identify neurologic modifiers.

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 May 2010.

    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.