ANGELMAN SYNDROME FOUNDATION INC

With You For The Journey

aka ASF   |   Aurora, IL   |  www.angelman.org

Mission

Our mission is to advance the awareness and treatment of Angelman Syndrome through education and information, research, advocacy,  and support for individuals with Angelman Syndrome, their families, and other concerned parties.

Ruling year info

2001

CEO

Amanda Moore

Main address

3015 E New York St #A2-285

Aurora, IL 60504 USA

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EIN

59-3092842

NTEE code info

Health (General and Financing) (E80)

Birth Defects (G20)

Single Organization Support (H11)

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

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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?

Research

Largest programmatic expenditure for ASF. Focus is to the find the cause of AS, regulatory affects of UBE3A, and to effectively treat and cure Angelman syndrome.

Population(s) Served
Adults
Children and youth
People with disabilities
Caregivers
Families

Provide daily and continual 1:1 family support to individuals with AS and their families through information, networking, ASF Resource Team, phone and electronic support.

Population(s) Served
Adults
Children and youth
Caregivers
Families
People with disabilities

Throughout the year, the Angelman Syndrome Foundation hosts, participates in and receives support from events across the country.

The Angelman Syndrome Foundation has funded life-changing Angelman syndrome research and is the leading source of information about Angelman syndrome research, support, education, and therapies. The ASF continues to expand a network of clinics where people with AS can receive specialized healthcare from experts who understand AS.

None of this would be possible without the continued support of the Angelman community, whether it is through annual special events, grassroots fundraising or a dedicated development program, we support all of our donors and fundraisers to meet and exceed their expectations in raising funds to find treatments and a cure, and support for all people with Angelman syndrome.

Population(s) Served
Adults
Children and youth
Caregivers
Families
People with disabilities

Where we work

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 collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • 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,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

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

    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 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

ANGELMAN SYNDROME FOUNDATION INC
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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
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

ANGELMAN SYNDROME FOUNDATION INC

Board of directors
as of 03/10/2022
SOURCE: Self-reported by organization
Board chair

Kyle Rooney

No Affiliation

Term: 2021 - 2023

Kyle Rooney

Michael Cecere

Lesley McCullough McCallister

Peter England

Anna Blanding

Rebecca Burdine

Jim Lamb

Mindy McBride

Shannon Moyer

Andrew Oberwager

Susan Ravelette

David Routh

John Sugden

Charles Winslow

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 3/10/2022

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

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/15/2022

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.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
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.