Batten Disease Support & Research Association

Nonprofit profile at a glance

EIN
911397792
IRS 990 coverage
2012–2024
Forms available
Form 990 2024
Location
Gahanna, OH, USA
Phone
8004484570
Rating
82
Verdict
STRONG
Rating confidence
Moderate

Reported finances

Revenue
$601,964
Expenses
$967,326
Assets
$965,863
Liabilities
$197,874

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

14 people listed

Executive titles in this filing

  • AMY FENTON PARKER (PRESIDENT &)

Highest reported compensation

  • AMY FENTON PARKER (PRESIDENT &): $100,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

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.

What it reported doing in 2024

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.

Operating model

Revenue model
Donor-supported. 94% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 80% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 82
  • Transparency & Controls: 94
  • Accountability: 84
  • Sustainability: 21
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 70.8%; rating input score 71
  • Fundraising efficiency: $7.11 raised per $1 spent on fundraising; rating input score 27; 27th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 76th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 5 of 8 controls in place; rating input score 62
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Fail
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: -60.7%; rating input score 2; 2nd percentile among comparable filings
  • Total-asset coverage ratio: 1; rating input score 43; 43rd percentile among comparable filings
  • Liabilities to assets ratio: 0.2; rating input score 31; 31st percentile among comparable filings
  • Officer compensation ratio: 10.3%; rating input score 36; 36th percentile among comparable filings

Growth

  • Program expense growth: -2.1% per year; rating input score 0; 12th percentile among comparable filings
  • Revenue growth: 2.2% per year; rating input score 100; 26th percentile among comparable filings
  • Asset growth: 4.7% per year; rating input score 100; 37th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 70.8% of spending went to programs
  • Governance: 13 of 13 board members independent · 5 of 8 filing controls reported
  • Programs: 3 filed program accomplishments · $685K in reported program spending
  • Leadership: top reported pay $100K · 14 people listed
  • Consistency: 30 of 30 current checks pass
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 11 filing years from 2012 to 2024
  • Contacts: How to reach this organization
  • Money network: 9 filed money-flow records
  • Related organizations: 8 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Financial Efficiency: Fundraising efficiency scored 27/100.
  • Review — Accountability: Governance controls: 2 of 7 not reported.
  • High — Sustainability: Operating margin scored 2/100.
  • High — Growth: Program expense growth scored 0/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 43/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 31/100.
  • Moderate — Sustainability: Officer compensation ratio scored 36/100.