Foundation For Angelman Syndrome Therapeutics
- Assets
- $17.7m
- Revenue
- $4.0m
- Investments
- $6.4m
- Employees
- 6
- Location
- Austin, TX
- Founding
- 12/2008
- Data as of
- 12/2021
- EIN
- 26-3160079
Organization Overview
Foundation For Angelman Syndrome Therapeutics is located in Austin, TX. The organization was established in 2008. According to its NTEE Classification (H12) the organization is classified as: Fund Raising & Fund Distribution, under the broad grouping of Medical Research and related organizations. As of 12/2021, Foundation For Angelman Syndrome Therapeutics employed 6 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Foundation For Angelman Syndrome Therapeutics is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2021, Foundation For Angelman Syndrome Therapeutics generated $4.0m in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 20.5% each year . All expenses for the organization totaled $5.8m during the year ending 12/2021. While expenses have increased by 23.9% per year over the past 7 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2014, Foundation For Angelman Syndrome Therapeutics has awarded 40 individual grants totaling $20,861,330. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2021
Describe the Organization's Mission:
Part 3 - Line 1
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.
Describe the Organization's Program Activity:
Part 3 - Line 4a
FAST'S PRIMARY GOAL IS TO ADVANCE RESEARCH LEADING TO A CURE FOR AS IN THE FORM OF PROVIDING GRANTS TO UNIVERSITIES TO PERFORM RESEARCH AND TESTING.
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.
THE SCIENCE SYMPOSIUM HAS THREE DAYS OF EVENTS:1) TRANSLATIONAL RESEARCH SYMPOSIUM AND ABOM MEETING. THIS EVENT IS FOR SCIENTISTS, INDUSTRY PARTNERS AND MEDICAL PROFESSIONALS ONLY TO DISCUSS THE LATEST RESEARCH ADVANCEMENTS AND FOCUS ON COLLABORATIVE EFFORTS TO ACCELERATE RESEARCH.2) GLOBAL SCIENCE SUMMIT: FOCUS ON ANGELMAN SYNDROME TRANSLATIONAL RESEARCH. THIS IS A PRESENTATION OF MULTIPLE RESEARCHERS IN THE AS SPACE TO THE ANGELMAN PARENT COMMUNITY. 3) GLOBAL SCIENCE SUMMIT: FOCUS ON CLINICAL TRIALS. THIS EVENT IS A PRESENTATION BY MULTIPLE PHARMACEUTICALS TO PARENTS ON THE CURRENT STAGE OF THEIR RESPECTIVE THERAPEUTICS AND NEXT STEPS FOR AS PARENTS.
THE INTERNATIONAL ANGELMAN SYNDROME RESEARCH COUNCIL (INSYNC-AS) HELD ITS FIRST MEETING VIRTUALLY ON JULY 9, 2021. A JOINT PROJECT OF THE FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS (FAST) AND THE SIMONS FOUNDATION AUTISM RESEARCH INITIATIVE (SFARI), INSYNC-AS LAUNCHED WITH THE GOAL TO DRIVE ACCELERATION OF THE TRANSLATIONAL RESEARCH LANDSCAPE RELATED TO TREATMENTS FOR ANGELMAN SYNDROME (AS) AND OTHER NEURODEVELOPMENTAL DISORDERS (NDDS). THE MEETING AIMED TO BRING TOGETHER EXPERTS WITH PRECLINICAL, CLINICAL, REGULATORY AND INDUSTRY PERSPECTIVES TO DISCUSS NEW WAYS TO ACCELERATE THIS INITIATIVE INTO SUCCESSFUL THERAPIES. THESE EFFORTS WERE ALSO AIMING TO FORM A FOUNDATION TO SERVE AS A MODEL FOR OTHER RARE NDDS.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Kena Richert CFO | OfficerTrustee | 40 | $152,083 |
Maiddy Dunigan Former Officer And COO | 40 | $152,083 | |
Kelly David Co-Vice Chairperson | OfficerTrustee | 30 | $0 |
Kristy Dixon Secretary | OfficerTrustee | 25 | $0 |
John Schuellter Chairperson | OfficerTrustee | 30 | $0 |
Ben O'connor Treasurer | OfficerTrustee | 5 | $0 |
Outside Vendors & Contractors
| Vendor Name (Service) | Service Year | Compensation |
|---|---|---|
Akira Production Related To Annual Gala Planning And Prod | 12/30/21 | $414,685 |
Saul Ewing Arstein & Lehr Llp Legal Fees For 2021 | 12/30/21 | $110,177 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Federated campaigns | $0 |
| Membership dues | $0 |
| Fundraising events | $3,873,959 |
| Related organizations | $0 |
| Government grants | $55,104 |
| All other contributions, gifts, grants, and similar amounts not included above | $1,853,086 |
| Noncash contributions included in lines 1a–1f | $57,686 |
| Total Revenue from Contributions, Gifts, Grants & Similar | $5,782,149 |
| Total Program Service Revenue | $4,011 |
| Investment income | $115,898 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | -$296,954 |
| Net Income from Fundraising Events | $326,154 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $0 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $3,977,487 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic organizations and domestic governments. | $3,910,364 |
| Grants and other assistance to domestic individuals. | $0 |
| Grants and other assistance to Foreign Orgs/Individuals | $0 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $304,166 |
| Compensation of current officers, directors, key employees. | $114,062 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $300,539 |
| Pension plan accruals and contributions | $0 |
| Other employee benefits | $0 |
| Payroll taxes | $36,958 |
| Fees for services: Management | $0 |
| Fees for services: Legal | $169,858 |
| Fees for services: Accounting | $16,952 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $53,211 |
| Fees for services: Other | $5,438 |
| Advertising and promotion | $143,829 |
| Office expenses | $5,557 |
| Information technology | $0 |
| Royalties | $0 |
| Occupancy | $0 |
| Travel | $1,770 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $0 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $14,584 |
| Insurance | $4,351 |
| All other expenses | $63,713 |
| Total functional expenses | $5,835,365 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $1,369,488 |
| Savings and temporary cash investments | $7,165,247 |
| Pledges and grants receivable | $1,665,000 |
| Accounts receivable, net | $0 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $0 |
| Net Land, buildings, and equipment | $29,169 |
| Investments—publicly traded securities | $0 |
| Investments—other securities | $6,380,671 |
| Investments—program-related | $0 |
| Intangible assets | $0 |
| Other assets | $1,140,419 |
| Total assets | $17,749,994 |
| Accounts payable and accrued expenses | $140,148 |
| Grants payable | $3,193,674 |
| Deferred revenue | $0 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $21,070 |
| Total liabilities | $3,354,892 |
| Net assets without donor restrictions | $14,379,645 |
| Net assets with donor restrictions | $15,457 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Retained earnings, endowment, accumulated income, or other funds | $0 |
| Total liabilities and net assets/fund balances | $17,749,994 |
Grants Awarded
Over the last fiscal year, Foundation For Angelman Syndrome Therapeutics has awarded $2,916,405 in support to 7 organizations.
| Grant Recipient | Amount |
|---|---|
Davis, CA PURPOSE: TRANSLATIONAL ANALYSIS OF GAIT AS A PRIMARY OUTCOME MEASURE IN ANGELMAN SYNDROME AND IND ENABLING STUDIES. | $1,093,891 |
New Haven, CT PURPOSE: GENERATION AND CHARACTERIZATION OF A NEW AS MOUSE MODEL THAT RECAPITULATES THE LARGE DELETION OF HUMAN 15Q11-Q13 AND A CONTROL LINE THAT CARRIES A DELETION OF ALL GENES IN 15Q11-Q13 BUT UBE3A | $579,804 |
Philadelphia, PA PURPOSE: A. THE UBE3A ANTISENSE TRANSCRIPT (UBE3A-AS) IS A LONG NON-CODING MRNA THAT SILENCES EXPRESSION OF THE PATERNAL UBE3A GENE IN NEURONS. INTERRUPTION OF THIS IMPRINTING PHENOMENON CAN BE DONE THROUGH ASOS, CRISPR-GRNA OR OTHER TECHNOLOGIES LIKE MICRORNA (MIRNA). THIS PROJECT IS AIMING TO DEVELOP A STRATEGY TO SUPPRESS THE UBE3A-AS IN THE MOUSE MODEL OF AS USING MIRNAS. ADVANTAGES TO MIRNA ARE THAT THEY ARE SUBJECT TO ENDOGENOUS CELLULAR PROCESSING AND REGULATION, WHICH CAN HELP CIRCUMVENT ISSUES RELATED TO OVEREXPRESSION OF EXOGENOUS GENETIC MATERIAL (WITH UBE3A REPLACEMENT), AND THE NEED FOR REPEATED REDOSING (WITH ASOS). MIRNA IS THOUGHT TO BE ADVANTAGEOUS OVER SHRNA DUE TO ENDOGENOUS CELLULAR PROCESSING AND REGULATION COMPARED TO OVEREXPRESSION YOU COULD GET WITH SHRNA. | $458,872 |
UNIVERSITY OF COLORADO DENVER PURPOSE: THE AIM OF THIS PROJECT IS TO CREATE CARE PROTOCOLS FOR THE EMERGENCY AND URGENT MANAGEMENT OF INDIVIDUALS WITH AS AND UTILIZE PROSPECTIVE AVAILABILITY OF AN AS-EXPERT PROVIDER TO UNDERSTAND THE UTILITY OF THE PROTOCOLS. TO TEST THESE PROTOCOLS AND PERFORM QUALITY IMPROVEMENT IN THE MANAGEMENT OF AS, AN EMERGENCY LINE AVAILABLE 24 HOURS A DAY AND 7 DAYS PER WEEK WILL BE AVAILABLE TO FAMILIES TO CALL TO REACH AN AS-SPECIALIST FOR PROVIDER-TO- PROVIDER CONTACT. | $383,163 |
NORTH CAROLINA STATE UNIVERSITY PURPOSE: THE OBJECTIVE OF THIS WORK IS TO ADDRESS THIS CHALLENGE DIRECTLY THROUGH THE GENERATION OF TWO TYPES OF HUMAN STEM CELL LINES THAT CONTAIN EITHER 'UNIVERSAL LANDING PADS' THAT CAN BE USED BY THE ANGELMAN RESEARCH COMMUNITY OR EPIGENONE EDITORS THAT WILL CONVERT A WILD TYPE MATERNAL PWS-AS LOCUS INTO ONE THAT RESEMBLES PATERNAL IMPRINTING PATTERNS SIMILAR TO THAT IN ICD AND UPD FORMS OF ANGELMAN SYNDROME. THESE ENGINEERED CELL LINES WILL ENABLE RESEARCHERS TO EFFICIENTLY INTRODUCE DIVERSE NUMBERS AND COMBINATIONS OF GENES AT TUNABLE EXPRESSION LEVELS, WITHOUT HAVING TO USE INEFFICIENT GENOME EDITING TECHNOLOGIES FOR EACH NEW GENE THEY WANT TO STUDY. IN PARTICULAR, THIS WORK WILL AIM TO PROVIDE HUMAN STEM CELL LINES THAT CAN BE RAPIDLY USED BY MOST OTHER INVESTIGATORS WITH BASIC CELL CULTURE EQUIPMENT TO GENERATE MODELS OF IMPRINTING CENTER DEFECTS AND UNIPARENTAL DISOMY. | $173,139 |
Winston Salem, NC PURPOSE: A HUMAN PLATFORM TO EFFICIENTLY STUDY CLASS 1 DELETED GENES | $149,661 |
Grants Recieved
Over the last fiscal year, we have identified 16 grants that Foundation For Angelman Syndrome Therapeutics has recieved totaling $111,632.
| Awarding Organization | Amount |
|---|---|
American Online Giving Foundation Inc Newark, DE PURPOSE: GENERAL SUPPORT | $26,609 |
Community Foundation Of Greater Memphis Inc Memphis, TN PURPOSE: GENERAL OPERATIONAL SUPPORT | $25,000 |
Schwab Charitable Fund San Francisco, CA PURPOSE: HEALTH | $15,350 |
American Endowment Foundation Hudson, OH PURPOSE: MEDICAL RESEARCH | $15,000 |
Hauske Family Foundation Inc Milwaukee, WI PURPOSE: RESEARCH PROJECT | $10,000 |
Morgan Stanley Global Impact Funding Trust Inc Indianapolis, IN PURPOSE: UNRESTRICTED GENERAL SUPPORT | $6,250 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Foundation For Angelman Syndrome Therapeutics Austin, TX | $17,749,994 | $3,977,487 |
National Trauma Institute San Antonio, TX | $700,417 | $2,906,343 |
1 Million 4 Anna Foundation Addison, TX | $0 | $147,941 |
International Pediatric Research Foundation Inc The Woodlands, TX | $2,089,828 | $1,515,531 |
Rare Village Foundation Mckinney, TX | $958,533 | $2,314,057 |
Broach Foundation For Brain Cancer Research Houston, TX | $383,452 | $130,078 |
Nancy Taylor Foundation For Chronic Diseases Tulsa, OK | $2,667,551 | $586,944 |
Guadalupe Regional Medical Foundation Seguin, TX | $1,974,239 | $851,459 |
Karnival Krewe De Louisiane Inc Baton Rouge, LA | $31,921 | $440,057 |
Carson Leslie Foundation Dallas, TX | $787,532 | $356,640 |
Be The Difference Foundation Dallas, TX | $239,212 | $300,744 |
Curing Childrens Cancer Fund Houston, TX | $65,752 | $0 |