Fightsma Inc Subsidiary Group Return

Nonprofit profile at a glance

EIN
912047580
IRS 990 coverage
2013–2016
Forms available
Form 990 2016
Location
Richmond, VA, USA
Phone
7032991144
Rating
53
Verdict
MIXED
Rating confidence
Moderate
Sector
Nerve, Muscle and Bone Diseases

Official website

Reported finances

Revenue
$21,821
Expenses
$557
Assets
$0
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2016. Amounts in USD.

Leadership & pay

11 people listed

People named in this filing

  • JOSEPH SLAY (CHAIR)
  • TERRY GRIFFIN (VICE CHAIR)
  • 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 2016. 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 2016

Fightsma brings together the world's 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
Direct operator. The filing allocates 100% 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

MIXED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and a relatively small share of total spending goes to programs.

Rating breakdown

  • Financial Efficiency: 20
  • Transparency & Controls: 90
  • Accountability: 76
  • Sustainability: 54
  • Growth: 0

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 0.7%; rating input score 1
  • Program expense ratio: 26.2%; rating input score 26
  • Fundraising efficiency: $1,678.54 raised per $1 spent on fundraising; rating input score 99; 99th 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: Limited
  • Major donor itemization: Limited
  • 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: 97.4%; rating input score 99; 99th 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 62; 62nd percentile among comparable filings

Growth

  • Program expense growth: -83% per year; rating input score 0; 6th percentile among comparable filings
  • Revenue growth: -58% per year; rating input score 0; 9th percentile among comparable filings
  • Asset growth: -25.1% per year; rating input score 0; 9th percentile among comparable filings

Details

  • Where the money goes: 0.7% of revenue deployed · 26.2% of spending went to programs
  • Governance: 11 of 11 board members independent · 3 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $146 in reported program spending
  • Leadership: top reported pay $0 · 11 people listed
  • Consistency: 10 of 10 current checks pass
  • Schedules: 4 filed schedules
  • Filing history: 4 filing years from 2013 to 2016
  • Contacts: How to reach this organization
  • Related organizations: 1 filed related-organization link
  • 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: Mission deployment rate scored 1/100.
  • High — Financial Efficiency: Program expense ratio scored 26/100.
  • Moderate — Accountability: Governance controls: 3 of 6 not reported.
  • 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.