Foundation for Angelman Syndrome Therapeutics

Can't Stop Won't Stop

aka FAST   |   DOWNERS GROVE, IL   |  www.cureangelman.org

Mission

FAST is run by an all-volunteer board of Angelman syndrome (AS) parents and professionals dedicated to finding a cure for AS and related disorders through the funding of an aggressive research agenda. The foundation is committed to assisting individuals living with Angelman syndrome to realize their full potential and quality of life. 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.

Ruling year info

2008

Chairperson

Paula Evans

Main address

PO BOX 608

DOWNERS GROVE, IL 60515-0608 USA

Show more contact info

EIN

26-3160079

NTEE code info

Specifically Named Diseases (G80)

Fund Raising and/or Fund Distribution (G12)

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

IRS filing requirement

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

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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

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
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 2018 are $15.2M. Our total program expenses since 2008 are 92.4% of our overall expenses.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Annual gala attendees at the Hyatt Regency in Chicago, Illinois

Total revenue earned to support advocacy efforts

This metric is no longer tracked.
Totals By Year
Related Program

FIRE Initiative (FAST Integrative Research Environment)

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

FAST's total donations since inception through December 2018 is $23.7M. We have invested $15.2M of this in research/program expenses and have $9.3M on hand to invest in research in 2019 and 2020.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

FAST has almost 18,000 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.

Financials

Foundation for Angelman Syndrome Therapeutics
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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Foundation for Angelman Syndrome Therapeutics

Board of directors
as of 8/14/2020
SOURCE: Self-reported by organization
Board chair

Paula Evans

FAST

Term: 2008 -

Maiddy Dunigan

FAST Vice-Chairperson

Roy Azout

Director

Allyson Berent-Weisse

CSO

Kelly David

Director

David Gurzick

Director

Chloe Knouff

Director

Sam Maydew

Director

Ben O'Connor

Director

Kena Richert

CFO

John Schlueter

Director

Bryan Thompson

Director

Sharon Weil-Chalker

Director

Kristy Dixon

Secretary

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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • 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

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data