CONQUERING CHD

We exist to conquer the most common birth defect

Madison, WI   |  www.conqueringchd.org

Mission

We exist to conquer the most common birth defect. We engage, listen, learn, and act. We create visibility and empower all impacted by congenital heart disease. We accomplish this through awareness, knowledge, community, and research.

Ruling year info

2014

Executive Director

David M. Kasnic

Main address

37 Kessel Court, Suite 205 c/o Grobe & Associates

Madison, WI 53711 USA

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Formerly known as

PEDIATRIC CONGENITAL HEART ASSOCIATION INC

EIN

46-3576700

NTEE code info

Heart and Circulatory System (G43)

IRS filing requirement

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

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Communication

Blog

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?

Patient & Family Access to Data and Decision-Making Information

Learning you or your child has congenital heart disease can be devastating. This new diagnosis comes with a lifetime of life-or-death choices. A key belief in our work is that patients and families should have access to hospital data and other information needed to make informed healthcare decisions. To facilitate this, we created several resources and provide free access to the CHD community on our website.

Hospital Navigator is a website for patients with congenital heart disease and their families, to learn about surgical outcomes and program availability at hospitals across the United States. It uses existing data and provides a framework for patients and families to have educated conversations with their care teams. www.conqueringchd.org/learn/hospital-navigator

Available in English and Spanish for families, teen patients, and adult patients, our Guided Questions Tools provide a starting point for conversations with the care team. The suggested topics are sorted by common conversations across the patient’s lifespan: learning about care team/care center, information about upcoming procedures or hospital stays, discussing treatment options, looking ahead/preparing for the future. www.conqueringchd.org/learn/guided-questions

Held annually, we host a Summit on Transparency and Public Reporting in Pediatric and Congenital Heart Disease. This forum provides a place for patients, families, providers, healthcare administrators, insurance payors, and news media to discuss the latest trends in CHD transparency and reporting. It is also the only forum in which patients and families can participate in these discussions, thus moving the landscape forward on their behalf.
www.conqueringchd.org/involvement/2020-summit-on-transparency-and-public-reporting/

Population(s) Served
Children and youth
Families

It can be a lot of work taking care of your physical and mental health as a patient with congenital heart disease. We believe that robust, accurate, and relatable educational materials and programming for the patient and family community can in turn help improve engagement, outcomes, and quality of life. Not everyone has a similar capacity, learning style, or desire for information, therefore we present materials across multiple modalities. All resources, programs, and materials are free to the community and available on our website.

CHD Wise is an educational series designed for patients and families, by patients and families. It is a regular opportunity for the community to engage with experts on specific topics, where many CHD families may not usually have access to such experts. Most topics are derived from regular inquiries that Conquering CHD receives from the community. Courses are held virtually, some recorded and some live. www.conqueringchd.org/learn/chdwise.

Conquering CHD maintains a robust educational section on their website. From diagnosis and one’s first learning about CHD, to preparing for surgeries, to resources for school or mental health support, to taking control of your care as you transition to adulthood, the website is relatable and comprehensive. Scientific Advisory Committee members regularly review any clinical materials, and sources are cited when outside resources are shared. Materials specific to populations such as teens, adults, bereaved families, Spanish-speaking families, and caregivers of patients are available.
www.conqueringchd.org/learn/start-here

Population(s) Served
Families
Adults

Navigating life with a hidden, chronic medical disease is quite a roller coaster ride for most people with congenital heart disease. The best support for a CHD patient or family member is another CHD patient or family member! Conquering CHD has several support options for different populations of the community. All support options are free and available both in-person and on our website.
www.conqueringchd.org/involvement/get-connected-connect-with-others/

State Chapters are a program in 16 states. These chapters are run by volunteer Board members and include activities - social and educational - support, and awareness events in their areas. State Chapters also participate in all national programs and events.

The ACHD Support Group serves teens and adults with CHD only. The social media group is a place to meet other patients, share your story, and get advice. This group hosts virtual video chats with sessions specifically for teens only, and adults only. The ACHD Support Group is also a place to get the latest news on trends in ACHD care and programs.

Our Bereaved Families Support Group is based on social media and allows families who have lost a loved one to CHD to connect, grieve, and celebrate together. This group welcomes all family members of deceased patients, regardless of time since the loved one passed away, or their age at the time of passing.

The Spanish-Speaking Support Group is also based on social media and provides an avenue for Spanish-speaking patients and families to connect and receive resources and advice in Spanish. This group is in addition to our Spanish webpage.

Population(s) Served
Children and youth
Families

The experience of the congenital heart disease patient matters. By telling their story, they can help effect positive change. We believe in helping them find their voice. Conquering CHD hosts an annual conference in Washington, D.C., focused on advocacy at the federal level. The conference is attended by patients, families, providers, news media, and healthcare administrators. Patients and families receive the latest news in areas such as research, surgical and treatment innovation, transparency in the media. Patients, families, and providers alike, participate in advocacy skill-building workshops, including civic education in federal legislation.

This conference also boasts meetings for special populations in the CHD community. Bereaved families look forward to the annual coffee chat. Youth ages 5-12 enjoy time together, CHD-related crafts, advocacy workshops, and friendship with other patients. Teens ages 13-17 find time to connect through apps and games, advocacy panels, and field trips around the city. Adult patients take time to meet each other, compare stories, and continue building their support network. Parents of children with CHD can connect with others through similar lived experience and continue building their support network.

Providers and non-patient/family attendees have the chance to hear directly from patients and families about how CHD affects their lives. The combination of a patient/family member + provider while advocating on Capitol Hill is so powerful!

Population(s) Served
Families
Adults

When people with congenital heart disease consider their future, there are often more questions than answers. Patient-driven research can help inform decision making, result in innovative new treatments, and improve outcomes. We have a multi-faceted approach to research involving advocacy, consulting, and direct funding.

Recently, we've developed a database, InformCHD, to collect patient self-reported information for research purposes. This is the first of its kind, by patients and families, for patients and families.

The first project utilizing the database is a survey to gather more information about the clinical impact of COVID-19 on children and adults with congenital heart disease.

Population(s) Served
Children and youth
Adults

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.), Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees,

  • 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,

  • 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?

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

CONQUERING CHD
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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.

CONQUERING CHD

Board of directors
as of 6/10/2021
SOURCE: Self-reported by organization
Board chair

Trey Flynn

NeJame Law

Term: 2019 - 2021

Callie Chiroff

Marquette University

David Kasnic

Conquering CHD

Andy Kay

Slalom Consulting

Amy Reczek

Sales/Business Consultant

Megan Setzer

Senior Workflow Advisor, XSOLIS

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

Organizational demographics

SOURCE: Self-reported; last updated 11/10/2020

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
Native American/American Indian/Indigenous
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data