Health—General & Rehabilitative

ANGELMAN SYNDROME FOUNDATION INC

  • Aurora, IL
  • www.angelman.org

Mission Statement

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.

Main Programs

  1. Research
  2. Family Support
  3. Fundraising and Management
Service Areas

Self-reported

International

The Angelman Syndrome Foundation serves individuals and families in all 50 states plus over 20 countries worldwide. We support basic and clinical research throughout the globe.

ruling year

2001

Principal Officer since 2004

Self-reported

Eileen Braun

Keywords

Self-reported

Education, research, information exchange, support.

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Also Known As

ASF

EIN

59-3092842

 Number

7871917337

Contact

Cause Area (NTEE Code)

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.

Programs + Results

How does this organization make a difference?

Programs

Self-reported by organization

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

Program 1

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.

Category

Medical Research

Population(s) Served

Children and Youth (infants - 19 years.)

Adults

Budget

$1,006,791

Program 2

Family Support

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.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Children and Youth (infants - 19 years.)

Adults

Budget

$392,472

Program 3

Fundraising and Management

Not available

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Budget

$1,656,661.00

Service Areas

Self-reported

International

The Angelman Syndrome Foundation serves individuals and families in all 50 states plus over 20 countries worldwide. We support basic and clinical research throughout the globe.

Social Media

Funding Needs

Research Family Support Wagstaff Fellowship

Videos

External Reviews

Source: greatnonprofits.org

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

ANGELMAN SYNDROME FOUNDATION INC
Fiscal year: Oct 01-Sep 30

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Operations

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

ANGELMAN SYNDROME FOUNDATION INC

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2015, 2014 and 2013
  • Board Chair and Board Members
  • Access to the GuideStar Community
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Principal Officer

Eileen Braun

STATEMENT FROM THE Principal Officer

"The Angelman Syndrome Foundation takes pride in its long-standing committment to providing direct support to families of indivdiuals with Angelman syndrome (AS), as well as to being the largest non-governmental funder of Angelman-specific research. Our dedication and committment to individuals with AS and their families through direct support, educational offerings and AS-specific research is unparalleled. It is a privilege to serve and support this wonderful, ever-growing community."

Governance

BOARD CHAIR

Timothy McCarty

No Affiliation

Term: July 2009 - July 2013

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization

Yes

BOARD ORIENTATION & 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 & 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?