Disease, Disorders, Medical Disciplines

Children's Cardiomyopathy Foundation, Inc.

  • Tenafly, NJ
  • http://www.childrenscardiomyopathy.org

Mission Statement

The Children's Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on pediatric cardiomyopathy, a chronic and potentially life-threatening heart disease that can affect children of all ages regardless of gender, ethnicity or socio-economic background. CCF is dedicated to finding causes and cures for pediatric cardiomyopathy through the support of research, education, awareness and advocacy.

Main Programs

  1. CCF Pediatric Cardiomyopathy Research Grant Program
  2. CCF & American Heart Association Pediatric Cardiomyopathy Joint Research Award
Service Areas

Self-reported

International

CCF is a national organization that serves the needs of medical/healthcare professionals and families with at-risk or diagnosed  children affected by primary and secondary cardiomyopathy.  While CCF's primarily focus is on the U.S. and Canada, the Foundation does extend its resources and services to individuals and medical institutions outside of North America such as the United Kingdom and Australia.

ruling year

2002

Principal Officer since 2002

Self-reported

Ms. Lisa W. Yue

Keywords

Self-reported

cardiomyopathy, pediatrics, children, genetic disorders, medical research, heart disease, congenital heart defect

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Also Known As

CCF

EIN

75-2986661

 Number

0664432262

Contact

Cause Area (NTEE Code)

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.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

As the first national group focused specifically on pediatric cardiomyopathy, CCF is involved in all aspects of the disease from research and eduction to patient support, awareness and advocacy.

CCF's work involves

Catalyzing research and promoting education
Advancing treatment models
Providing leadership and advocacy in the pediatric community
Offering child and family assistance

More than $2.3 million has been committed to research and treatment initiatives, and CCF has led the way in establishing a biologic specimen repository and planning the first international scientific conference.In the process, CCF has partnered with the National Heart, Lung and Blood Institute, American Heart Association, National Society of Genetic Counselors and the National Organization for Rare Diseases.  CCF continues to be an invaluable lifeline to affected families providing information, resources and guidance. CCF's educational materials are now distributed to more than 70 hospitals in North America.

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

CCF Pediatric Cardiomyopathy Research Grant Program

The Children’s Cardiomyopathy Foundation (CCF) offers an annual grant
program to support innovative basic, clinical, population, or
translational studies relevant to the cause, diagnosis, or treatment of
cardiomyopathy (Dilated, Hypertrophic, Restrictive, Left Ventricular
Non-Compaction, or Arrhythmogenic Right Ventricular Cardiomyopathy) in
children under the age of 18 years.

CCF’s grant program is designed to provide seed funding to
investigators for the testing of initial hypotheses and collecting of
preliminary data to secure long-term funding by the National
Institutes of Health and/or other major granting institutions.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Children and Youth (infants - 19 years.)

Budget

$50,000.00

Program 2

CCF & American Heart Association Pediatric Cardiomyopathy Joint Research Award

The Children’s Cardiomyopathy Foundation (CCF) has partnered with the
American Heart Association (AHA) to establish a research award for
investigators conducting research specific to pediatric cardiomyopathy. CCF will provide $35,000 per year for two years to fund one AHA
Beginning Grant-in-Aid or one Grant-in-Aid related to pediatric
cardiomyopathy research. The AHA will provide the balance of the funds
needed to fully fund the selected award.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Children and Youth (infants - 19 years.)

Budget

$70,000.00

Charting Impact

Self-reported by organization

Five powerful questions that require reflection about what really matters - results.

  1. What is the organization aiming to accomplish?
    CCF remains committed to accelerating the search for cures through the support of research, education, and increased awareness and advocacy of pediatric cardiomyopathy. While there has been progress, there is still a significant amount of work to do.
    CCF will continue to support promising research studies that will improve the management of children with cardiomyopathy and reduce the mortality and transplant rate associated with the disease. Our goal is to work towards a national clinical study to test therapies that address the underlying cause of the disease in the pediatric population.
    In terms of patient care, CCF plans to work with top centers across the country to establish a more comprehensive care program. These programs draw upon the collective knowledge and expertise of practitioners from a range of medical disciplines including pediatric cardiologists, heart surgeons, pediatric cardiac nurses and specialists in genetics, psychiatry, neurology, immunology, child life, nutrition, social work and endocrinology.
    Because cardiomyopathy is a leading cause of sudden cardiac death in the young, CCF is aiming to introduce awareness programs to the general public and pediatricians so that more at risk children with cardiomyopathy are diagnosed earlier and properly treated by specialists.
  2. What are the organization's key strategies for making this happen?
    Not available.
  3. What are the organization's capabilities for doing this?
    Not available.
  4. How will they know if they are making progress?
    Not available.
  5. What have and haven't they accomplished so far?
    Not available.
Service Areas

Self-reported

International

CCF is a national organization that serves the needs of medical/healthcare professionals and families with at-risk or diagnosed  children affected by primary and secondary cardiomyopathy.  While CCF's primarily focus is on the U.S. and Canada, the Foundation does extend its resources and services to individuals and medical institutions outside of North America such as the United Kingdom and Australia.

Funding Needs

CCF is in need of funding for our 1) research grant program, 2) scientific workshops, 3) patient support services and educational material development, and 4) patient and medical professional outreach initiatives.

External Reviews

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Financials

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

CHILDRENS CARDIOMYOPATHY FOUNDATION
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

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Operations

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

Children's Cardiomyopathy Foundation, Inc.

Leadership

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  • Forms 990 for 2015, 2014 and 2014
  • Board Chair and Board Members
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Principal Officer

Ms. Lisa W. Yue

BIO

Lisa Yue is the founding executive director of the Children's Cardiomyopathy Foundation (CCF), which she and her husband established after losing two children to cardiomyopathy. She is the recipient of Good Housekeeping's “2004 Hero for Health Award" and the Children's Hospital of New York- Presbyterian “2005 Golden Heart Award." Ms. Yue's background is in marketing and brand management, having worked at companies such as HJ Heinz, McDonald's and Walt Disney. Before forming CCF, she was the Asia regional marketing director for Columbia TriStar Films, a division of Sony Pictures Entertainment. She is a graduate of Cornell University and the University of Chicago Graduate School of Business. She is also a mother to four heart-healthy children.

Governance

BOARD CHAIR

Lisa Yue

Children's Cardiomyopathy Foundation

BOARD LEADERSHIP PRACTICES

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RESPONSE NOT PROVIDED

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?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?