Fightsma Inc

Nonprofit profile at a glance

EIN
541610701
IRS 990 coverage
2013–2017
Forms available
Form 990 2017
Location
Richmond, VA, USA
Phone
8474211346
Rating
75
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Nerve, Muscle and Bone Diseases

Reported finances

Revenue
$17,956
Expenses
$316,450
Assets
$0
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2017. Amounts in USD.

Leadership & pay

11 people listed

People named in this filing

  • JOSEPH SLAY (CHAIRMAN)
  • TERRY GRIFFIN (VICE CHAIRMA)
  • DEANNA GRIFFIN (TREASURER)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

Source: IRS Form 990. Selected filing: tax year 2017. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Fightsma engages leading scientists and policymakers to pursue a cure for, and raises public awareness of spinal muscular atrophy (sma), a degenerative neuromuscular disease which is the leading genetic cause of death for children under 2. Approximately 1 in 40 people carry the gene for this disease, and about 1 in 10,000 live births are affected. In addition to funding vital scientific research, fightsma works to maintain an active dialog between the scientific research community, the patient community, and policymakers.

What it reported doing in 2017

Fightsma brings together the worlds leading sma scientists to collaborate on the state of existing research on sma and pursue funding for that research. Fightsma also educates patients and families about promising research and clinical trials - and stays engaged with published research updates during the year. Fightsma actively engages government leaders and policy makers to build support for pediatric research. Finally, fightsma provides patients and families with resources (online, in social media, and in print) to understand sma and what they can do to live with the disease, and help in the fight for a cure.

Operating model

Revenue model
Donor-supported. 100% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 55% for direct work, and 45% for grants.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. Some filing-based governance responses are negative or unanswered and the required major-donor schedule is missing or incomplete.

Rating breakdown

  • Financial Efficiency: 88
  • Transparency & Controls: 81
  • Accountability: 76
  • Sustainability: 9
  • Growth: 0

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 87%; rating input score 87
  • Fundraising efficiency: $3.74 raised per $1 spent on fundraising; rating input score 33; 33rd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 62nd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 80th percentile among comparable filings
  • Major donor itemization: No; rating input score 0
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 3 of 7 controls in place; rating input score 43
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • 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: -1,662.4%; rating input score 3; 3rd percentile among comparable filings
  • Total-asset coverage ratio: 0; rating input score 2; 2nd percentile among comparable filings
  • Liabilities to assets ratio: Limited
  • Officer compensation ratio: 0%; rating input score 61; 61st percentile among comparable filings

Growth

  • Program expense growth: -7.1% per year; rating input score 0; 38th percentile among comparable filings
  • Revenue growth: -27% per year; rating input score 0; 18th percentile among comparable filings
  • Asset growth: -42.1% per year; rating input score 0; 4th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 87% of spending went to programs
  • Governance: 11 of 11 board members independent · 3 of 7 filing controls reported
  • Programs: 2 filed program accomplishments · $275K in reported program spending
  • Leadership: top reported pay $0 · 11 people listed
  • Consistency: 16 of 16 current checks pass
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 5 filing years from 2013 to 2017
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • Related organizations: 2 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.

  • Moderate — Accountability: Governance controls: 3 of 6 not reported.
  • High — Transparency & Controls: Major donor itemization scored 0/100.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 33/100.
  • High — Sustainability: Operating margin scored 3/100.
  • High — Growth: Program expense growth scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • High — Sustainability: Total-asset coverage ratio scored 2/100.
  • High — Growth: Asset growth scored 0/100.