PLATINUM2024

Foundation for Angelman Syndrome Therapeutics

Cure Angelman Now

aka FAST   |   AUSTIN, TX   |  www.cureangelman.org
GuideStar Charity Check

Foundation for Angelman Syndrome Therapeutics

EIN: 26-3160079


Mission

FAST is the premier patient advocacy organization working to cure Angelman syndrome. As the largest funder of Angelman syndrome research in the world, our goal is to drive forward transformative research and development programs as quickly as possible for those living with Angelman syndrome regardless of age or genotype.

Ruling year info

2008

Chairperson

Ryan Jacob

Main address

PO BOX 40307

AUSTIN, TX 78704 USA

Show more contact info

EIN

26-3160079

Subject area info

Diseases and conditions

Human services

Population served info

People with disabilities

NTEE code info

Specifically Named Diseases (G80)

Fund Raising and/or Fund Distribution (G12)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Tax forms

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We are 100 percent committed to accelerating treatments and a cure for Angelman syndrome (AS). The symptoms of AS have been under-addressed in the research community for far too long. Research aimed at identifying treatments for the motor dysfunction, seizures and behavioral characteristics of Angelman syndrome is one of FAST’s top priorities. FAST takes pride in investing in high-risk, high-reward research grants that have already produced positive and promising results. A cure for AS is now within reach but will require the expertise and collaboration of the best and brightest minds from a variety of fields in science and research.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

FIRE Initiative (FAST Integrative Research Environment)

FIRE funds more than two-dozen scientists from top universities to work collaboratively to identify, characterize and implement new therapeutics for the treatment and ultimate cure of Angelman syndrome. The FIRE Initiative is the most aggressive research program to date dedicated to finding a cure for AS.

Population(s) Served
People with disabilities

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total dollar amount of grants awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with disabilities

Related Program

FIRE Initiative (FAST Integrative Research Environment)

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Since the inception of FAST in 2008, our total program expenses through 2022 are $37.0M.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with disabilities

Related Program

FIRE Initiative (FAST Integrative Research Environment)

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Annual summit in Chicago for years 2008-2019. Virtual conference in 2020, and 2021 was in Austin, TX. The 2022-23 conferences were in Hollywood, FL. The 2024 summit will be in Orlando, Florida.

Total revenue earned to support advocacy efforts

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with disabilities

Related Program

FIRE Initiative (FAST Integrative Research Environment)

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

As of YE2022, FAST's total donations since inception through December 2021 is $43.9M. We have invested $28.6M of this in research/program expenses and have $63.1M on hand to invest in research.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with disabilities

Related Program

FIRE Initiative (FAST Integrative Research Environment)

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

FAST has 21,000+ Facebook followers which allows FAST to quickly and accurately assimilate relevant information to our Angelman community around the world.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our goal is to bring practical treatment into current medical practice as quickly as possible. It is our hope that grants we fund will lead to additional research support from government agencies, other funding sources and organizations around the globe. FAST is served by two boards: the board of directors and the scientific advisory board. Together, we are working hard to bring practical treatment into current medical practice as quickly as possible.

A true research collaboration, and the infrastructure required to advance a cure for Angelman syndrome, was nonexistent. FAST addressed this challenge by creating the first-of-its-kind FIRE Initiative (FAST Integrative Research Environment), which funds more than two-dozen scientists from top universities to work collaboratively to identify, characterize and implement new therapeutics for the treatment and ultimate cure of Angelman syndrome. The FIRE Initiative is the most aggressive research program to date dedicated to finding a cure for AS.

For decades, small, non-profit disease research organizations like FAST have modeled their funding philosophies after the National Institutes of Health (NIH) where they budget their research dollars, put out a once-a-year call for applications, wait for scientists to come to them with ideas, select the most promising applications and hope they actually see results. FAST is not at all interested in this slow, linear approach to funding research and instead adopted the innovative model of venture philanthropy, recruiting a stellar in-house team to work in partnership with leading scientists on ambitious, high-risk/high-reward study designs that will ensure promising therapeutics make it from the laboratory bench to the patient’s bedside as quickly as possible.

Adopting a business model where we have input and control over the direction of the research, FAST assembled an in-house team of experts in science, medicine, business management, finance, law, accounting and technology. In addition to funding research grants, including over $360,000.00 in Postdoctoral Fellowships, FAST has also entered into contracted research on targeted projects with well defined milestones and deliverables.

Angelman Syndrome is currently one of the most promising fields of scientific research; relying solely on investigator-initiated research to identify and implement patient treatments is inefficient and short sighted. Additionally, true collaboration of researchers working cooperatively is the only successful approach to treatment science.

In January 2011, FAST contracted research with Dr. Edwin Weeber to test four FDA approved compounds in our mouse model. One of those compounds, Minocycline, showed promise in treating some of the symptoms of AS. With additional funding and testing, Minocycline was identified as a candidate for human clinical trial. FAST provided the funding for the trial in 2012 and we anticipate results to be published soon.

In May of 2013, FAST launched the most aggressive Angelman research initiative in history, bringing 24 researchers from 4 universities together in true collaboration to identify additional treatments and a cure for Angelman Syndrome. The FAST Integrative Research Environment (FIRE) Initiative has already identified several possible treatment candidates for human clinical trial. FAST will continue to either fund small, proof of concept trials that will better position the Angelman community for larger FDA funding and/or partner with pharmaceutical companies to bridge the so-called “Valley of Death” in translational research.

FAST has proven the success of our funding philosophy in a very short amount of time and with relatively little funding. It is not about how much you spend, but rather how you spend it. FAST is funding smarter, faster science and with proper funding, a cure is now just within our reach.

The FAST track: from bench to bedside: FAST is the largest non-governmental funder of Angelman syndrome research and the only organization with a detailed plan towards a cure. While others said a cure was not possible, FAST spent the past seven years strategically investing millions of dollars in research to lay the foundation for scientific breakthroughs. Recent advancements in the understanding of Angelman syndrome, made by FAST scientists, suggest finding a cure for this disorder in the near future is not only possible, it’s inevitable. Brightest minds partner in race to cure Angelman syndrome FAST brought together a multi-disciplined team of more than two-dozen scientists from top research universities and pharmaceutical companies to join forces on a focused path to a cure. Known as the “FIRE” Consortium: FAST Integrative Research Environment, FAST’s scientists know exactly what causes Angelman syndrome. They have cured the symptoms of the disorder in mice using several strategies.

Now is the time for action. FAST’s Roadmap to a Cure for Angelman syndrome is bold, ambitious, and, with your help, achievable. The Roadmap costs an estimated $20 million dollars, and AS families have been challenged to raise $2 million of that investment. We are calling on everyone connected to a loved one with Angelman syndrome to support this research. Please join us by making a financial gift, spreading the word with friends and family members, and fundraising to help us cross the finish line. Your efforts will take us one step closer to making therapeutics available to those affected with AS and, ultimately, finding a cure that will free our children.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Foundation for Angelman Syndrome Therapeutics
Fiscal year: Jan 01 - Dec 31
Financial documents
2021 YE2021 Audited Financials 2020 YE2020 Financials
done  Yes, financials were audited by an independent accountant. info

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

8.10

Average of 21.34 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

78.8

Average of 25.5 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

4%

Average of 3% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Foundation for Angelman Syndrome Therapeutics

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Foundation for Angelman Syndrome Therapeutics

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

Foundation for Angelman Syndrome Therapeutics

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of Foundation for Angelman Syndrome Therapeutics’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

Created in partnership with

Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation $2,326,325 $1,177,304 $7,137,471 -$1,478,689 $41,435,123
As % of expenses 78.9% 25.8% 233.8% -25.4% 464.6%
Unrestricted surplus (deficit) after depreciation $2,326,325 $1,177,304 $7,137,471 -$1,493,273 $41,420,539
As % of expenses 78.9% 25.8% 233.8% -25.6% 463.7%
Revenue composition info
Total revenue (unrestricted & restricted) $5,274,393 $5,739,183 $9,357,654 $3,977,487 $52,477,819
Total revenue, % change over prior year -39.7% 8.8% 63.0% -57.5% 1219.4%
Program services revenue 0.0% 0.0% 0.1% 0.1% 0.7%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 1.5% 2.4% 0.7% 2.9% 1.0%
Government grants 0.0% 0.0% 0.0% 1.4% 0.0%
All other grants and contributions 98.6% 63.3% 38.4% 152.2% 8.3%
Other revenue -0.1% 34.3% 60.8% -56.6% 90.1%
Expense composition info
Total expenses before depreciation $2,948,068 $4,561,879 $3,052,395 $5,820,781 $8,918,437
Total expenses, % change over prior year -47.8% 54.7% -33.1% 90.7% 53.2%
Personnel 2.1% 1.5% 9.7% 11.0% 10.4%
Professional fees 4.2% 1.1% 2.3% 4.2% 3.6%
Occupancy 0.0% 0.0% 0.0% 0.0% 0.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 76.7% 89.4% 78.7% 67.2% 75.6%
All other expenses 17.0% 7.9% 9.3% 17.6% 10.3%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $2,948,068 $4,561,879 $3,052,395 $5,835,365 $8,933,021
One month of savings $245,672 $380,157 $254,366 $485,065 $743,203
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $43,753 $0
Total full costs (estimated) $3,193,740 $4,942,036 $3,306,761 $6,364,183 $9,676,224

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 36.2 26.4 37.7 17.6 78.8
Months of cash and investments 36.2 31.6 71.7 30.7 80.4
Months of estimated liquid unrestricted net assets 30.8 23.0 62.4 29.6 75.1
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $8,901,866 $10,036,905 $9,589,668 $8,534,735 $58,592,171
Investments $0 $1,968,564 $8,652,192 $6,380,671 $1,134,755
Receivables $0 $0 $25,050 $1,665,000 $2,554,414
Gross land, buildings, equipment (LBE) $0 $0 $0 $43,753 $43,753
Accumulated depreciation (as a % of LBE) 0.0% 0.0% 0.0% 33.3% 66.7%
Liabilities (as a % of assets) 14.9% 27.1% 13.2% 18.9% 11.5%
Unrestricted net assets $7,558,143 $8,735,447 $15,872,918 $14,379,645 $55,800,184
Temporarily restricted net assets $15,590 N/A N/A N/A N/A
Permanently restricted net assets $0 N/A N/A N/A N/A
Total restricted net assets $15,590 $15,590 $45,690 $15,457 $15,457
Total net assets $7,573,733 $8,751,037 $15,918,608 $14,395,102 $55,815,641

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

The people, governance practices, and partners that make the organization tick.

Documents
Letter of Determination is not available for this organization
Form 1023/1024 is not available for this organization

Chairperson

Ryan Jacob

Number of employees

Source: IRS Form 990

Foundation for Angelman Syndrome Therapeutics

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

Foundation for Angelman Syndrome Therapeutics

Board of directors
as of 03/11/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Ryan Jacob

FAST

Term: 2021 -

Roy Azout

Director

Allyson Berent-Weisse

CSO

Kelly David

Director

Ben O'Connor

Secretary

John Schlueter

Chairperson

Kristy Dixon

Co-Vice Chairperson / Treasurer

Lauren Hoffer

Director

Ryan Jacob

Director

Amelia Beatty

Director

Nora Xu

Director

Meagan Cross

Director

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 3/11/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Decline to state
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

No data

Equity strategies

Last updated: 09/01/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.

Contractors

Fiscal year ending
There are no fundraisers recorded for this organization.