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The Neuromuscular Disease Foundation

EIN 06-1789643 · Beverly Hills, CA

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

LegitimacyPassesRegistration and standingFinancial healthGood70 out of 100GovernanceStrong91 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE NEUROMUSCULAR DISEASE FOUNDATIONS (NDF) MISSION mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach, and funding for critical research focused on treatments and a cure.

Income
$65,419
Spending
$352,447
Spent on programs
90%
Reserves
22.4 months of spending
Largest source of income
investment income, 58%
Employees
0
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

Good: 70 out of 100. Higher than 39% of charities in its peer group (diseases, under $250k).

  • Reserves

    35 of 35

    Spendable reserves would cover 22.4 months of spending.

  • Debt

    20 of 20

    It owes 0% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 439% of income.

  • Income trend

    0 of 15

    Income fell 88% on the year before.

  • Spending floor

    15 of 15

    90% of spending went to programs and raising each dollar of donations cost 23 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: 91 out of 100. Higher than 83% of charities in its peer group (diseases, under $250k).

  • Independent board

    18 of 25

    3 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.

  • 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 (3)
  1. $248,068 spent. CLINICAL RESEARCH: Since 2006 NDF has been proactively seeking and funding clinical research projects to help understand GNE Myopathy (HIBM) and to hopefully help find treatments and cures. NDF is a world leader in funding scientists, universities and laboratories, the results of which have proven instrumental in how new studies are built.
  2. $54,066 spent. Patient & Carrier Advocacy: NDF strives to create a two-way connection between patients and scientists in order to maximize patient understanding about the latest research and treatment options being developed; and for physicians, scientists, and pharmaceutical companies to gain a better perspective, not only about patients needs and experiences, but also about how this impacts families as well.
  3. $15,902 spent. Outreach & Education: A significant part of NDF's mission is preventing and suppressing the symptoms of GNEM in patients through screening and public education. NDF values the importance of educating physicians about this rare disease. We focus on educating the public about carrier screening aids, particularly for those in populations with higher carrier rates.

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 January 2007.

    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.