PLATINUM2024

Children's Cardiomyopathy Foundation

A Cause for Today... A Cure for Tomorrow

aka CCF   |   Tenafly, NJ   |  http://www.childrenscardiomyopathy.org

Mission

The Children's Cardiomyopathy Foundation (CCF) is a national non-profit focused on pediatric cardiomyopathy, a chronic and potentially life-threatening heart disease that can affect children of any age regardless of gender, ethnicity, or socio-economic background. CCF's mission is to accelerate the search for causes and cures for pediatric cardiomyopathy through increased research, education, awareness and advocacy, and to support families whose children are affected by the disease. To learn more about our programs and services, as well as our achievements please visit CCF at www.childrenscardiomyopathy.org

Notes from the nonprofit

The Children's Cardiomyopathy Foundation (CCF) takes an active role in advancing knowledge of cardiomyopathy, raising the profile of the disease, and offering comprehensive support services and resources for those impacted by the disease. Since CCF's establishment, pediatric cardiomyopathy is attracting the attention of more researchers, and there has been a four-fold increase in the number of pediatric cardiomyopathy studies supported by the National Institutes of Health. CCF is consistently rated as a top non-profit by America's leading charity evaluators GreatNonprofits, CharityNavigator, and GuideStar. The Foundation's work was documented in an article, "From Partnership to Progress in the Field of Pediatric Cardiomyopathy," published in Progress in Pediatric Cardiology (https://dev.childrenscardiomyopathy.org/downloadable_files/2019_progress_in_pediatric_cardiomyopathy.pdf)

Ruling year info

2002

Founder & President of the Board

Ms. Lisa W. Yue

Main address

24 West Railroad Avenue Suite 408

Tenafly, NJ 07670 USA

Show more contact info

EIN

75-2986661

NTEE code info

Pediatrics (G98)

Heart and Circulatory System (G43)

Heart and Circulatory (H43)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2023, 2022 and 2021.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Cardiomyopathy is a disease of the heart muscle that can be potentially life-threatening in children. Early diagnosis is critical because cardiomyopathy can be progressive, leading to heart failure or sudden death. Signs of cardiomyopathy are not always obvious, and even when symptoms are present, it may be confused with asthma, an infection, or a gastrointestinal problem. Children who are not diagnosed and treated are at a greater risk of needing a heart transplant and pre-mature death. Currently, there is no surgical procedure to repair the heart or stop the progression of the disease. Increased research is needed to better understand the causes of the disease among the young. Because it is a chronic disease, children face psychosocial issues related to living with an unpredictable disease. This may lead to anxiety/depression and impact self-acceptance and peer interaction. There may be school-related concerns due to frequent doctor visits, hospitalizations, or complications.

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?

Cardiomyopathy Center of Care Program

The Children's Cardiomyopathy Foundation Cardiomyopathy Center of Care program recognizes medical centers with expertise in pediatric cardiomyopathy. A designated CCF Cardiomyopathy Center of Care provides high-quality cardiac care and specialized disease management to children with cardiomyopathy.

Center recognition is based on hospital data and meeting CCF’s specialty center requirements. In general, recognized centers manage a high volume of pediatric cardiomyopathy patients, offer a variety of pediatric patient services, specialize in the treatment and management of cardiomyopathy in children, and are affiliated with an academic institution with a research focus.

For more information, visit https://www.childrenscardiomyopathy.org/pages/physician-resources/centers-care-program/

Population(s) Served

The Foundation organizes the international scientific conference on cardiomyopathy in children to bring together a multidisciplinary group of cardiomyopathy specialists to review and discuss the most current research on pediatric cardiomyopathy. The conference aims to identify research gaps, priorities and direction, as well as evaluate new approaches and technologies that may contribute to a better understanding of the disease and improve intervention and prevention. Conferences are generally hosted every 2-3 years.

For more information, visit https://www.childrenscardiomyopathy.org/unique/physician-resources/scientific-conference-2021-post.html

Population(s) Served
Academics

The Children’s Cardiomyopathy Foundation hosts family conferences every two years in partnership with a medical center. The educational event provides an opportunity for affected families (adult and children) to hear from medical experts in the field and connect with other cardiomyopathy families. The conference features presentations for both the pediatric and adult segment, patient/physician panels, and break-out sessions covering a variety of topics.

For more information, visit https://www.childrenscardiomyopathy.org/unique/family-resources/family-conference.html

Population(s) Served
Children and youth
Families

CCF Ambassadors are selected parents and caregivers who have a child diagnosed with cardiomyopathy and are willing to take a leadership role in expanding CCF’s reach and impact in their community. Ambassadors are trained to offer informational and emotional support to diagnosed families and provide CCF with “on-the-ground” feedback to ensure that their needs are being met. A CCF Ambassador serves as an advocate for families affected by cardiomyopathy and an important voice in their community and beyond.

Population(s) Served
Children and youth
Families
Children and youth
Families

Where we work

Awards

Hero for Health Award 2004

Good Housekeeping

Golden Heart Award 2005

Children's Hospital of New York-Presbyterian

Award for Education 2014

New Jersey Biz Healthcare Heroes

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of organizational partners

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

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

National heart, school, youth sports, and healthcare organizations support the Children's Cardiomyopathy Awareness Month every September to raise awareness of pediatric cardiomyopathy.

Number of families served

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

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

CCF offers patients and family members a wide range of support services and educational resources. More information is available at: https://dev.childrenscardiomyopathy.org/Family-Support-Services-63-

Number of phone calls/inquiries

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

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

CCF is committed to helping families cope with their child's diagnosis. Working with 80 hospitals in the U.S. and Canada, CCF has assisted families in search of information, guidance, and support.

Number of research studies funded

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

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

CCF's Research Grant Program is focused on accelerating basic science, clinical, epidemiologic, and translational research on pediatric cardiomyopathy. 55 grants have been awarded since 2002.

Number of reports written/published

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

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

To date, CCF-funded research studies have yielded 70 peer-reviewed scientific and medical journal articles and 154 presentations at national medical meetings.

Total dollars received in contributions

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

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Revenue includes individual and corporate donations as well as fundraising income from annual appeals, events, and family fundraisers.

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.

For decades, pediatric cardiomyopathy was not a well know disease among the patient and physician communities. Outcomes for children with cardiomyopathy were extremely poor, and there was no treatment protocol for children with cardiomyopathy. The research community was fragmented, and no new medical devices or drugs were being developed for the pediatric population.

Families who had a diagnosed child or who had lost a child to the disease were often left to cope on their own without any resources or support services. Finding understandable disease information and locating specialized treatment centers was a challenge.

As the only organization focused on pediatric cardiomyopathy, we continue to address all the challenges of the disease, focusing on three key areas:

Improving Health Outcomes

CCF aims to advance research on pediatric cardiomyopathy by funding pilot studies and multi-center studies through our research partnerships with the American Academy of Pediatrics, American Heart Association, and National Heart, Lung, and Blood Institute-funded Pediatric Cardiomyopathy Registry. Going forward, our goal is to expand our research collaborations with industry partners developing new therapies for pediatric heart failure and cardiomyopathy.

Enhancing Quality of Life

CCF provides an access point for accurate and relevant information on pediatric cardiomyopathy, as well as support services that address the emotional aspects of living with a chronic condition. We will continue to expand our list of collaborative partners and develop patient-friendly materials to educate the general public and help empower patients to better cope with their cardiomyopathy diagnosis.
CCF will look to expand our existing family support services to provide emotional support and fellowship to more individuals affected by cardiomyopathy. This includes scheduling more webinars, physician Q&As, and family conferences to enable families to share, learn, and connect.

Being Heard

Through CCF’s federal advocacy efforts, families will have a communications platform to share their stories and highlight the needs and challenges of living with cardiomyopathy. CCF’s national awareness and advocacy programs give families the opportunity to increase awareness in their community using the tool kit that CCF provides. CCF will build upon existing awareness programs during National Heart Month in February and Children’s Cardiomyopathy Awareness Month in September to call attention to the symptoms, risk factors and family cardiac health component of cardiomyopathy. At the Federal level. CCF will continue working with congressional leaders and federal agencies, to introduce cardiomyopathy focused bills in the U.S. House of Representatives and Senate and request congressional appropriations language to support national cardiomyopathy research and education initiatives.

The vision of the Children's Cardiomyopathy Foundation (CCF) is to create a future of hope in which pediatric cardiomyopathy is detected earlier, more lives are saved, and all children with the disease can live full and active lives. CCF's mission is to accelerate the search for causes and cures for pediatric cardiomyopathy through increased research, education, awareness and advocacy, and to support families whose children are affected by the disease.

Research: advocate for and fund research initiatives into the causes, diagnosis, and treatment of pediatric cardiomyopathy.

Education: offer reliable and easy-to-understand information to families, and educate medical professionals about the latest advances in the evaluation and medical management of pediatric cardiomyopathy.

Advocacy and Awareness: generate recognition and understanding of pediatric cardiomyopathy among the general public, legislators and the medical community.

Family Support: provide educational resources and support services to those affected while fostering a caring community of cardiomyopathy families.

The Children’s Cardiomyopathy Foundation is the first and only public interest group focused on all five forms of cardiomyopathy affecting children. Since 2002, it has represented at-risk and diagnosed children and the families who care for them.

The Children’s Cardiomyopathy Foundation (CCF) is led by a group of dedicated professionals who are committed to making a difference in the lives of those affected by pediatric cardiomyopathy. CCF's Board of Directors is comprised of business professionals from various disciplines who oversee the Foundation's policies and activities. CCF’s Medical Advisory Board consists of 8 leaders in the field of genetics and pediatric cardiology. Medical advisors provide guidance on the Foundation’s research agenda, oversee the research grant program and offer medical advice on patient-related issues.
CCF staff members are passionate about what they do and deeply committed to CCF's mission of finding causes and cures for pediatric cardiomyopathy. CCF employs 4 full time and 3 part time staff members focused on administration and bookkeeping, development and communications, fundraising and community engagement, family outreach and support, and medical outreach.
Over the years, CCF has developed a broad base of loyal corporate donors, engaged families, and various organizational partners and legislative champions.

The Children's Cardiomyopathy Foundation (CCF) takes an active role in advancing knowledge of cardiomyopathy, raising the profile of the disease, and offering comprehensive support services and resources for those impacted by the disease. Since CCF's establishment, pediatric cardiomyopathy is attracting the attention of more researchers, and there has been a four-fold increase in the number of pediatric cardiomyopathy studies supported by the National Institutes of Health.

CCF is consistently rated as a top non-profit by America's leading charity evaluators GreatNonprofits, CharityNavigator, and GuideStar. The Foundation's work was documented in an article, "From Partnership to Progress in the Field of Pediatric Cardiomyopathy," published in Progress in Pediatric Cardiology.

Key achievements include:

• Established partnerships with the American Heart Association and American Academy of Pediatrics to offer pediatric cardiomyopathy research grants

• Funded a number of research and education initiatives, resulting in more than 300 medical publications and presentations on pediatric cardiomyopathy

• Organized the first international scientific conference on pediatric cardiomyopathy with the National Heart, Lung, and Blood Institute as a co-sponsor

• Partnered with the National Institutes of Health-funded North American Pediatric Cardiomyopathy Registry to support several multi-center studies, working groups, and publication development

• Secured additional funding for cardiomyopathy research under the Department of Defense Peer Review Medical Research Program

• Established an Accredited Centers of Care program to identify high-quality cardiac centers that specialize in pediatric cardiomyopathy

• Provides financial assistance to qualifying families in need of medical and non-medical coverage while their child is undergoing treatment

• Collaborated with the American Heart Association, National Society of Genetic Counselors, Pediatric Heart Transplant Foundation, and the National Organization for Rare Disorders to develop educational materials on pediatric cardiomyopathy

• Distributes a variety of patient education materials to 80 hospitals across the U.S. and Canada

• Launched the Children’s Cardiomyopathy Awareness Month with support from members of Congress and 13 national partners. Current partners include: American Academy of Pediatrics, American College of Cardiology, American Heart Association, American Public Health Association, Centers for Disease Control and Prevention, National Alliance for Youth Sports, National Association of School Nurses, National Athletic Trainers' Association, Parent Heart Watch, Sarcomeric Human Cardiomyopathy Registry, School-Based Health Alliance, Society of Thoracic Surgeons, and Sudden Cardiac Arrest Foundation

• Introduced the first bill on cardiomyopathy in the U.S. House of Representatives and the Senate.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • 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 inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

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

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, 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

Children's Cardiomyopathy Foundation
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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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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • 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.

Children's Cardiomyopathy Foundation

Board of directors
as of 06/19/2024
SOURCE: Self-reported by organization
Board chair

Lisa Yue

Children's Cardiomyopathy Foundation

Brian Nold

Lisa Yue

Edward Yu

Carney Hawks

Raymond Yue

Carolyn Kong

Won Choi

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 6/19/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Asian/Asian American
Gender identity
Female
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data