Foundation for Angelman Syndrome Therapeutics
Nonprofit profile at a glance
- EIN
- 263160079
- IRS 990 coverage
- 2013–2024
- Forms available
- Form 990 2024
- Location
- Austin, TX, USA
- Phone
- 8667830078
- Rating
- 88
- Verdict
- STRONG
- Rating confidence
- Standard
- Sector
- Fund Raising and/or Fund Distribution
Reported finances
- Revenue
- $5,388,260
- Expenses
- $10,391,969
- Assets
- $44,915,881
- Liabilities
- $4,707,817
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
16 people listed
Executive titles in this filing
- ALANA NEWHOUSE (PRESIDENT/CEO)
Highest reported compensation
- ALLYSON BERENT (CHIEF SCIENCE OFFICER): $509,945 total reported compensation
- RYAN K FISCHER (CHIEF OPERATING OFICER): $286,130 total reported compensation
- ALANA NEWHOUSE (PRESIDENT/CEO): $245,000 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
Angelman syndrome (as) is a neurodevelopmental disorder characterized by global development delays and severe speech impairment. A few individuals with as develop functional speech, but most communicate through a mixture of gestures, eye gaze, adapted sign language and augumentative communication devices. Individuals with as have development delay and intellectual disabilities. Current research suggests that neuronal development occurs correctly in as, but neuronal functioning is impaired. This neuronal impairment impacts the individual's ability to learn in that skills are acquired less rapidly than in age-matched peers. The foundation for angelman syndrome therapeutics is an organization of families and professionals dedicated to finding a cure for as and related disorders through the funding of an agressive research agenda, education, advocacy, and community support. Fast is committed to assisting individuals living with as to realize their full potential and quality of life.
What it reported doing in 2024
As is a rare disorder. The community of parents and caregivers of individuals with as rely heavily on social networking to become informed and seek advice and guidance on the challenges which the disorder presents. It is one of fast's objectives to educate, support, and strengthen this community.
Operating model
- Revenue model
- Donor-supported. 72% of the money available for current operations came from contributions and gifts.
- Distribution model
- Hybrid. The nonprofit split its reported program spending across 60% for direct work, and 40% for grants.
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 expenses are high relative to revenue.
Rating breakdown
- Financial Efficiency: 89
- Transparency & Controls: 85
- Accountability: 100
- Sustainability: 35
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 100%; rating input score 100
- Program expense ratio: 88.8%; rating input score 89
- Fundraising efficiency: $9.34 raised per $1 spent on fundraising; rating input score 35; 35th percentile among comparable filings
Transparency & Controls
- Consistency checks: 94.7%; rating input score 95; 25th percentile among comparable filings
- Pay-setting controls: 3 of 6 controls in place; rating input score 50
- Compensation committee: Missing
- Independent consultant: Pass
- Other Form 990s reviewed: Missing
- Written employment contract: Pass
- Compensation survey or study: Missing
- Board or committee approval: Pass
- Foreign activity oversight: Limited
- Grant itemization coverage: 100%; rating input score 100; 72nd 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: 9 of 9 controls in place; rating input score 100
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Pass
- CEO compensation review process: Pass
- Other executive compensation review process: Pass
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Pass
Sustainability
- Operating margin: -92.9%; rating input score 1; 1st percentile among comparable filings
- Total-asset coverage ratio: 4.32; rating input score 81; 81st percentile among comparable filings
- Liabilities to assets ratio: 0.1; rating input score 58; 58th percentile among comparable filings
- Officer compensation ratio: 9.4%; rating input score 32; 32nd percentile among comparable filings
Growth
- Program expense growth: 22.1% per year; rating input score 100; 87th percentile among comparable filings
- Revenue growth: 19.1% per year; rating input score 100; 87th percentile among comparable filings
- Asset growth: 28.5% per year; rating input score 100; 92nd percentile among comparable filings
Details
- Where the money goes: 100% of revenue deployed · 88.8% of spending went to programs
- Governance: 12 of 12 board members independent · 9 of 9 filing controls reported
- Programs: 2 filed program accomplishments · $9.2M in reported program spending
- Leadership: top reported pay $510K · 16 people listed · 3 of 6 pay-setting controls reported
- Highest-paid contractors: 5 contractors listed · $1.1M reported
- Consistency: 30 of 31 current checks pass · 1 finding to review
- Schedules: 8 filed schedules · includes major donors, grants, and executive pay
- Filing history: 11 filing years from 2013 to 2024
- Contacts: How to reach this organization
- Money network: 14 filed money-flow records
- Related organizations: 11 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 — Financial Efficiency: Fundraising efficiency scored 35/100.
- High — Sustainability: Operating margin scored 1/100.
- Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
- Moderate — Sustainability: Officer compensation ratio scored 32/100.
- Review — Sustainability: Liabilities to assets ratio scored 58/100.