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Adult Congenital Heart Association Inc Organization Name provided in the GuideStar Exchange* as of 10/08/2012: Adult Congenital Heart Association Inc

Organization Name as listed in the IRS Business Master File as of 10/17/2014: ADULT CONGENITAL HEART ASSOCIATION INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

AKA  ACHA
Philadelphia, PA
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GuideStar Summary

&1002; GuideStar Exchange Committed to transparency ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

Adult Congenital Heart Association Inc Organization Name provided in the GuideStar Exchange* as of 10/08/2012: Adult Congenital Heart Association Inc

Organization Name as listed in the IRS Business Master File as of 10/17/2014: ADULT CONGENITAL HEART ASSOCIATION INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: ACHA
Physical Address: Philadelphia, PA 19119 3508
EIN: 04-3447959
Web URL: www.achaheart.org 
Blog URL: www.achaheart.org/home/blog.aspx 
NTEE Category: G Disease, Disorders, Medical Disciplines
G43 Heart and Circulatory System
G Disease, Disorders, Medical Disciplines
G20 Birth Defects
E Health—General & Rehabilitative
E01 Alliance/Advocacy Organizations
Ruling Year: 1999 


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Mission Statement

The Adult Congenital Heart Association (ACHA) is a nonprofit organization that seeks to improve the quality of life and extend the lives of adults with congenital heart defects. Through education, outreach, advocacy and promotion of research, ACHA serves and supports the more than one million adults with congenital heart defects, their families, and the medical community.

Legitimacy Information

This organization is registered with the IRS.

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

Institutional funders should note that an organization’s inclusion on GuideStar.org does not satisfy IRS Rev. Proc. 2011-33 for identifying supporting organizations.

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Annual Revenue & Expenses

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October 2012)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: December 31, 2011

Total Revenue $1,346,342
Total Expenses $1,093,127

Revenue & Expenses

(GuideStar Exchange,
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October 2012)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: December 31, 2011

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership

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October 2012)

Amy Verstappen

Term:

Since Jan 2006

Profile:

President/CEO, joined the ACHA board in 2000, and was ACHA's first Fundraising Chair. She became ACHA Board President in 2002, and stepped off the ACHA Board to become ACHA's first paid President and Executive Director in January 2006. Before her personal experiences as a complex congenital heart survivor led her to patient advocacy, Ms. Verstappen worked as an educator with children and adults in a variety of settings. Ms. Verstappen received a Bachelor of Science in Sociology-Anthropology from Swarthmore College in 1983 and a Masters in Education from Lesley College in 1989. She has co-authored a number of publications on adults with congenital heart disease and has served as an ACHD consultant in venues such as the American College of Cardiology (ACC), the National Heart, Lung, and Blood Institute (NHLBI), and the International Society of Adult Congenital Cardiac Disease (ISACCD).

Board Chair (GuideStar Exchange,
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October 2012)

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Board Co-Chair (GuideStar Exchange,
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October 2012)

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Board of Directors (GuideStar Exchange,
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October 2012)

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Board Leadership Practices (GuideStar Exchange,
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October 2012)
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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.

Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

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?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in October 2012

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Programs

Program: Education and Outreach (GuideStar Exchange,
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October 2012)

Budget:
$613,368
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
Adults

Program Description:

Through the Heart to Heart Program, ACHA offers a variety of educational resources to ensure that the adult living with Congenital Heart Disease has the tools they need to protect and improve their lifelong health and well-being

Program Long-Term Success:

ACHA’s Heart to Heart Program includes the ACHA Personal Health Passport, the ACHA Travel Directory; monthly Webinars; on-line and printed articles and brochures; the ACHA Update, a monthly e-newsletter; a moderated Discussion Forum; National Conferences, and a peer support program, the Heart to Heart Ambassador program.

Program Short-Term Success:

ACHA has hosted monthly webinars on a variety of topics pertinent to  ACHD patient and/or family members since 2009.  Printed materials are developed in conjunction with webinar topics. All new members have been receiving a packet of educational materials via postal mail since 2011.

Program Success Monitored by:

Chief Executive Officer, Chief Operating Officer, Program Director, ACHA Patient and Family Program Committee

Program Success Examples:

The Heart to Heart Ambassador program developed in 2010 continues to serve both patient and family members. ACHA patient and family membership continues to grow at a rate of more than 70 new members a month. A Parent Outreach Program was recently developed.

Program: Advocacy (GuideStar Exchange,
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October 2012)

Budget:
$51,292
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
Adults

Program Description:

The Adult Congenital Heart Association advocates for improved data collection, research, secondary prevention and treatment options to improve and prolong the lives of those living with congenital heart disease.

Program Long-Term Success:

Since 2006, ACHA has developed report language and policy that passed into law.

Program Short-Term Success:

The CDC is developing a surveillance system to address the adult population of those living with congenital heart disease.

Program Success Monitored by:

Chief Executive Officer, Chief Operating Officer

Program Success Examples:

The Congenital Heart Futures Act, the first disease specific congenital heart disease legislation was passed into law in 2010, and funded as an individual line item in 2011. The Congressional Congenital Heart Caucus was formed in 2012.

Program: Research (GuideStar Exchange,
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October 2012)

Budget:
$175,123
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
Adults

Program Description:

ACHA’s Research Program aims to build partnerships with national CHD researchers to further expand our understanding of ACHD issues, conduct and promote research that engages patients and other stakeholders and develop strategies that unite patients with medical professionals to promote patient empowerment and lifelong cardiac health surveillance.

Program Long-Term Success:

ACHA partnered with nationally renowned researchers to execute two large scale, multicenter research projects and will build upon these successes to request more federal funding.

Program Short-Term Success:

The Research Empowerment for Adult Congenital Hearts (REACH) project generated not only one of the largest congenital heart-specific data sources in the United States, but also the only known congenital heart disease data set compiled via health information exchange rather than double-entry of data.

Program Success Monitored by:

Chief Executive Officer, Chief Operating Officer, ACHA Research Committee

Program Success Examples:

An interactive tool that offers comparative information on more than 90self-identified ACHD clinics in the US and Canada (the project started with 50 clinics). As far as we know, it is the only resource of this type in the US. In fact, U.S. News & World Report’s “Best Children's Hospitals”utilizes ACHA’s program directory when awarding hospitals points toward their rankings. The survey and program responses are updated annually.
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Impact Summary from the Nonprofit

Since 1998, the Adult Congenital Heart Association has been dedicated to improving the quality of life and extending the lives of adults living with congenital heart disease and is currently the leading organization dedicated solely to congenital heart disease. For the first time, thanks to medical advances and interventions, more than half of all individuals living with congenital heart disease are believed to be adults.
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