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Batten Disease Support and Research Association

EIN 91-1397792 · Gahanna, OH

Public records raise at least one point you should look into before giving.

LegitimacyCautionRegistration and standingFinancial healthWeak40 out of 100GovernanceGood86 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

OUR LONG-TERM VISION IS A WORLD WITHOUT BATTEN DISEASE. OUR MISSION IS TO SUPPORT BATTEN FAMILIES, FUND AND FACILITATE RESEARCH AND ADVOCATE FOR TREATMENTS AND A CURE.

Income
$601,964
Spending
$967,326
Spent on programs
71%
Reserves
0.9 months of spending
Largest source of income
donations and private grants, 94%
Employees
5
Volunteers
40
Highest pay
$100,000, president &

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

Weak: 40 out of 100. Higher than 7% of charities in its peer group (diseases, $250k to $1m).

  • Reserves

    4 of 35

    Spendable reserves would cover 0.9 months of spending.

  • Debt

    16 of 20

    It owes 20% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 61% of income.

  • Income trend

    5 of 15

    Income fell 19% on the year before.

  • Spending floor

    15 of 15

    71% of spending went to programs and raising each dollar of donations cost 14 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: 86 out of 100. Higher than 67% of charities in its peer group (diseases, $250k to $1m).

  • Independent board

    25 of 25

    13 of 13 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

    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 (3)
  1. $239,406 spent. PROGRAMS SUCH AS THE SIBLING PROGRAM, FAMILY HELP FUND, PARENT/MENTORS AND THE GENERAL BEREAVEMENT PROGRAM ALL WILL HELP TO ALLEVIATE STRESS AND HARDSHIP ON FAMILIES WHOSE LOVED ONES ARE VICTIMS OF BATTEN DISEASE.
  2. $201,481 spent. GRANTS WERE GIVEN FOR RESEARCH FOR A CURE FOR BATTEN DISEASE.
  3. $244,199 spent. CONFERENCES AND CONVENTIONS HELD FOR RESEARCH, DISCUSSIONS AND SUPPORT FOR A CURE FOR BATTEN DISEASE.

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 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 December 2024.

    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 February 1994.

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

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

    California's Attorney General lists its registration as delinquent as of April 30, 2006. Organizations on this list may not solicit donations in California.

    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.