Civic Intelligence

Foundation for Angelman Syndrome Therapeutics

EIN 26-3160079 • 501(c)3 • Austin, TX

Profile

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.

5900 Balcones Drive 8754Austin, TX 78731

www.cureangelman.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

37th percentile

0.10x

Higher debt load relative to assets than 37% of similar nonprofits.

501(c)3 • $25M-$50M nonprofits • Source year 2024

Liabilities / Revenue

76th percentile

0.87x

Higher debt load relative to revenue than 76% of similar nonprofits.

501(c)3 • $25M-$50M nonprofits • Source year 2024

Net Margin

3rd percentile

-93%

Higher net margin than 3% of similar nonprofits.

501(c)3 • $25M-$50M nonprofits • Source year 2024

Top Officer Pay

83rd percentile

$509,945

Higher top officer pay than 83% of similar nonprofits.

Top officer pay equals 9.5% of source-year revenue.

501(c)3 • $25M-$50M nonprofits • Source year 2024

Asset Growth

4th percentile

-23%

Faster asset growth than 4% of similar nonprofits.

501(c)3 • $25M-$50M nonprofits • Annualized from 2023 to 2024

Revenue Growth

12th percentile

-17%

Faster revenue growth than 12% of similar nonprofits.

501(c)3 • $25M-$50M nonprofits • Annualized from 2023 to 2024

Assets

Down

$44,915,881

Down $13,514,361 (-23%) from 2023

Liabilities

Down

$4,707,817

Down $13,901,567 (-75%) from 2023

Net Assets

Up

$40,208,064

Up $387,206 (+1.0%) from 2023

Revenue

Down

$5,388,260

Down $1,137,555 (-17%) from 2023

Expenses

Down

$10,391,969

Down $12,837,189 (-55%) from 2023

Net Income

Up

-$5,003,709

Up $11,699,634 (+70%) from 2023

Trend Graphs

Balance Sheet Trend

Grouped bars show assets, liabilities, and net assets across loaded filings.

$80M$60M$40M$20M$0Assets 2013: $1,108,989Liabilities 2013: $7,500Net Assets 2013: $1,101,4892013Assets 2014: $1,571,929Liabilities 2014: $150,000Net Assets 2014: $1,421,9292014Assets 2015: $1,194,959Liabilities 2015: $0Net Assets 2015: $1,194,9592015Assets 2016: $2,221,539Liabilities 2016: $80,000Net Assets 2016: $2,141,5392016Assets 2017: $7,713,003Liabilities 2017: $2,465,595Net Assets 2017: $5,247,4082017Assets 2018: $8,901,866Liabilities 2018: $1,328,133Net Assets 2018: $7,573,7332018Assets 2019: $12,005,469Liabilities 2019: $3,254,432Net Assets 2019: $8,751,0372019Assets 2020: $18,338,531Liabilities 2020: $2,419,923Net Assets 2020: $15,918,6082020Assets 2021: $17,749,994Liabilities 2021: $3,354,892Net Assets 2021: $14,395,1022021Assets 2022: $63,075,354Liabilities 2022: $7,259,713Net Assets 2022: $55,815,6412022Assets 2023: $58,430,242Liabilities 2023: $18,609,384Net Assets 2023: $39,820,8582023Assets 2024: $44,915,881Liabilities 2024: $4,707,817Net Assets 2024: $40,208,0642024

Highlighted filing

2024

Assets$44,915,881
Liabilities$4,707,817
Net Assets$40,208,064

Operations Trend

Revenue, expenses, and net income by year, with the latest filing highlighted.

$60M$40M$20M$0-$20MRevenue 2013: $881,702Expenses 2013: $947,452Net Income 2013: -$65,7502013Revenue 2014: $1,528,780Expenses 2014: $1,208,340Net Income 2014: $320,4402014Revenue 2015: $1,078,473Expenses 2015: $1,305,387Net Income 2015: -$226,9142015Revenue 2016: $4,397,320Expenses 2016: $3,450,740Net Income 2016: $946,5802016Revenue 2017: $8,749,699Expenses 2017: $5,643,830Net Income 2017: $3,105,8692017Revenue 2018: $5,274,393Expenses 2018: $2,948,068Net Income 2018: $2,326,3252018Revenue 2019: $5,739,183Expenses 2019: $4,561,879Net Income 2019: $1,177,3042019Revenue 2020: $9,357,654Expenses 2020: $3,052,395Net Income 2020: $6,305,2592020Revenue 2021: $3,977,487Expenses 2021: $5,835,365Net Income 2021: -$1,857,8782021Revenue 2022: $52,477,819Expenses 2022: $8,933,021Net Income 2022: $43,544,7982022Revenue 2023: $6,525,815Expenses 2023: $23,229,158Net Income 2023: -$16,703,3432023Revenue 2024: $5,388,260Expenses 2024: $10,391,969Net Income 2024: -$5,003,7092024

Highlighted filing

2024

Revenue$5,388,260
Expenses$10,391,969
Net Income-$5,003,709

Filings

Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Sep 29, 2025
Return Version
2024v5.2
Gross Receipts
$9,721,341
Mission and Program 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.

The foundation for angelman syndrome therapeutics (fast) is dedicated to finding a cure for angelman syndrome (as) and related disorders through the funding of an aggressive research agenda, education, awareness, and advocacy.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments Other Securities$5,674,693$30,923,753▲ $25,249,060
Investments Program Related$2,244,319$11,574,812▲ $9,330,493
Cash and Non-Interest-Bearing Accounts$701,529$1,121,744▲ $420,215
Accounts Receivable$0$773,423▲ $773,423
Pledges and Grants Receivable$2,219,320$415,000▼ $1,804,320
Savings and Temporary Cash Investments$47,521,755$33,599▼ $47,488,156
Prepaid Expenses and Deferred Charges$0$26,029▲ $26,029
Land, Buildings, and Equipment, Net$0$0→ $0
Total Assets$58,430,242$44,915,881▼ $13,514,361
Other Assets Total$68,626$47,521▼ $21,105
Liabilities
Grants Payable$18,215,653$3,932,850▼ $14,282,803
Accounts Payable and Accrued Expenses$327,900$730,241▲ $402,341
Other Liabilities$65,831$44,726▼ $21,105
Total Liabilities$18,609,384$4,707,817▼ $13,901,567
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$39,805,401$40,192,607▲ $387,206
Net Assets With Donor Restrictions$15,457$15,457→ $0
Total Net Assets Fund Balance$39,820,858$40,208,064▲ $387,206
Total Liabilities and Net Assets / Fund Balance$58,430,242$44,915,881▼ $13,514,361

Asset Categories

AssetBook ValueDepreciationBasis
Other Land Buildings$0$43,753$43,753
Investment Program Related Org$5,000,081--
Other Securities$6,281,350--
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseOtherTotal
Ryan K FischerChief Operating OficerFT$254,930$31,200$286,130
Alana NewhousePresident/CEOFT$245,000-$245,000
Kena PearsonChief Financial OfficerFT$211,068$21,500$232,568
Michele GolombuskiChief Development OfficerFT$190,693$19,375$210,068

Board Members and Trustees

NameTitle
Ryan JacobChairperson
Michael HanrahanVice Chairperson and Tr
BEN O'CONNORDirector
John SchlueterDirector
Karly WarnerDirector
Kelly DavidDirector
Lauren HofferDirector
Nora XuDirector
Roy AzoutDirector
Allyson BerentChief Science Officer
Amelia BeattySecretary
Guy ShapiralTresurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Faegre Drinker Biddle & Reath LLPAdvocacy Firm1500 K ST NW STE 1100, Washington, DC 20005$324,783
Van Ness Creative Strategies LLCMarketingONE HUNTINGTON QUADRANGLE STE 4S05, Melville, NY 11747$297,590
Choate Hall & Stewart LLPLegal ServicesTWO INTERNATIONAL PLACE, Boston, MA 02110$204,561
-Conulting5135 KINGWELL CIR, Oviedo, FL 32765$183,985
-Board Consultant3207 MEREDITH ST, Austin, TX 78703$131,250
Revenue and Support

Revenue Composition

Contributions and Grants
$3,723,744
Program Service Revenue
$0
Investment Income
$1,677,094
Other Revenue
$-12,578
All Other Contributions
$3,291,368
Change in Net Assets
$-5,003,709

Audited Revenue Reconciliation

Revenue per Audited Statements
$5,316,779
Revenue Not Reported on Financial Statements
$71,481
Revenue Not Reported on Form 990
$1,734,108
Total Revenue per Audited Statements
$7,050,887
Total Revenue per Form 990
$5,388,260
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$3,766,644
Grants and Similar Amounts Paid$3,698,573
Salaries, Compensation, and Employee Benefits$2,926,752
Total Fundraising Expense$398,605
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$3,698,573--$3,698,573
Other Salaries and Wages$1,675,728$196,539$158,026$2,030,293
Fees for Services Legal$752,775$45,824-$798,599
Current Officers, Directors, Trustees, and Key Employees$421,902$276,555$65,240$763,697
Fees for Services Other$391,161$25,779$12,166$429,106
Conferences and Meetings$367,048--$367,048
All Other Expenses$102,682$53,706$19,927$176,315
Other Expenses$84,077$0$84,077$168,154
Other Employee Benefits$99,673$22,480$10,609$132,762
Travel$92,380$16,850$16,850$126,080
Fees for Service Investment Mgmnt Fees-$71,481-$71,481
Office Expenses$26,133$5,894$2,782$34,809
Insurance-$13,047$13,047$26,094
Total Functional Expenses$9,231,557$761,807$398,605$10,391,969

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$10,695,189
Total Expenses per Form 990$10,391,969
Expenses per Audited Statements$10,320,488
Expenses Not Reported on Form 990$374,701
Expenses Not Reported on Financial Statements$71,481
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of PennsylvaniaPhiladelphia, PA115(1)UPENN 2023: RESEARCH, COLLABORATION & LICENSE AGREEMENT$5,860,869
BOSTON CHILDREN'S HOSPITALBoston, MA115(1)FT2022-006: ABOM - NATURAL HISTORY STUDY$470,957
Rush University Medical CenterChicago, IL115(1)Rush Coe$320,500
Duke UniversityCharlotte, NC115(1)FT2018-005 AMENDED: GPIC-COMM$317,848
Regents of the University of California DavisDavis, CA115(1)FT2022-007: GASTROINTESTINAL BIOMARKERS IN PRECLINICAL MODELS OF ANGELMAN SYNDROME$274,044
The Regents of the University of California San FranciscoSan Francisco, CA115(1)FT2023-002: DEVELOPING A CRISPRA THERAPY FOR THE CLASSI/II DELETION GENOTYPE OF ANGELMAN SYNDROME$210,711
Brown UniversityProvidence, RI115(1)FT2022-005: DEVELOPMENT OF BDNF POTENTIATING THERAPEUTICS FOR MOTOR AND COGNITIVE DYSFUNCTION IN AS$150,000
CHILDREN'S RESEARCH INSTITUTEWashington, DC115(1)FT2022-003: PEAK ALPHA FREQUENCY AS AN EEG BIOMARKER FOR ANGELMAN SYNDROME$140,846
Keck Graduate Institute of Applied Life SciencesClaremont, CA115(1)FT2022-002: TARGETING ANGELMAN SYNDROME THERAPEUTICS TO THE BRAIN UTILIZING NOVEL CELL PENETRATING PEPTIDES$125,000
Brown UniversityProvidence, RI115(1)PD2023-001: POSTDOCTORAL FELLOWSHIP PROGRAM$50,500
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$374,701
Fundraising Gross Income$322,583
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Annual Gala$322,583$322,583$374,701$-52,118
Total Events$322,583$322,583$374,701$-52,118
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Operating Lease Liabilities$44,726
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
Yes
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
Yes
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 4

The organization amended their by-laws on september 2, 2024.

Form 990, Part VI, Section A, Line 8B

The foundation does not currently have any committees with the authority to act on behalf of the governing body.

Form 990, Part VI, Section B, Line 11B

The books and records are maintained by fast's treasurer and reviewed by the cfo and the vice chairperson. Fast's treasurer gives fast's books and records to an outside cpa firm to prepare fast's form 990. Once completed the form 990 is provided to the treasurer, cfo and vice chairperson for review. The treasurer, cfo and vice chairperson review the return in great detail, asking clarifying questions and suggesting changes. Once the recommended changes have been incorporated into the return, the form 990 is distributed to all board members for questions, comments, and recommended changes. Once the board members questions have been answered and any changes incorporated into the return, the form 990 is filed.

Form 990, Part VI, Section B, Line 12C

Board members are required to certify on an annual basis any interest that could give rise to a conflict. If a conflict appears to have arisen, fast board of directors meet to discuss the potential conflict of interest and consult legal counsel and other applicable third-party experts as deemed necessary.

Form 990, Part VI, Section B, Line 15

The board obtained a written compensation analysis from willis towers watson, who specializes in executive compensation assessments. The board reviewed this compensation analysis, the job description, and the current needs of the foundation to set the compensation levels for the coo and cfo position. All board of directors, officers, and scientific advisory board members are non-compensated volunteers.

Form 990, Part VI, Section C, Line 19

Governing documents, the conflict of interest policy, and the financial statements are available upon request as well as on the foundation's website.

Filing and Contact Details

Filer

Filer Name
Foundation for Angelman Syndrome
EIN
26-3160079
Phone
8667830078
Address
5900 BALCONES DRIVE 8754, AUSTIN, TX 78731

Signing Officer

Name
Ryan Jacob
Title
Chairperson
Phone
8667830078
Signed
2025-09-29
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Ryan Jacob
Formed
2008
Legal Domicile
Il
Voting Board Members
12
Independent Board Members
12
Employees
11
Volunteers
291

Preparer

Firm
Hegre Mcmahon & Schimmel LLC
Address
600 ENTERPRISE DRIVE STE 109, OAK BROOK, IL 60523
Preparer
Steven Lombardo
Phone
3123456200
Supplemental Narrative

Financial Statement Notes

PART XI, LINE 2D - OTHER ADJUSTMENTS:

Direct expenses from fundraising events (page 9, part viii, line 8b)

PART XII, LINE 2D - OTHER ADJUSTMENTS:

Direct expenses from fundraising events (page 9, part viii, line 8b)

Form 990, Schedule D, Part XI, Line 2D and Part XII, Line 2D

Part xi, line 2d - direct expenses from fundraising events included on page 9, part viii, line 8b. Part xii, line 2d - direct expenses from fundraising events included on page 9, part viii, line 8b.

Raw XML AppendixShowing 400 of 910 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/Form990PartVIISectionAGrp/TitleTxt10DIRECTOR
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IRS990/Form990PartVIISectionAGrp/TitleTxt12CHIEF OPERATING OFICER
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IRS990/Form990PartVIISectionAGrp/TitleTxt14CHIEF FINANCIAL OFFICER
IRS990/Form990PartVIISectionAGrp/TitleTxt15CHIEF DEVELOPMENT OFFICER
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IRS990/MissionDesc0ANGELMAN 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.
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IRS990/ProgSrvcAccomActy2Grp/Desc0AS 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.
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