Basic Organization Information
Children's Cardiomyopathy Foundation, Inc.
- Also Known As:
-
CCF
- Physical Address:
-
Tenafly, NJ
07670
- EIN:
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75-2986661
- Web URL:
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www.childrenscardiom...
- NTEE Category:
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G Disease, Disorders, Medical Disciplines
-
G98 Pediatrics
-
G Disease, Disorders, Medical Disciplines
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G43 Heart and Circulatory System
-
H Medical Research
-
H43 Heart and Circulatory
- Year Founded:
-
2002
- Ruling Year:
-
2002
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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.
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Impact Statement from Nonprofit
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 $1.5 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.
Revenue and Expenses
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Financial Statements
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Chief Executive
Ms. Lisa W. Yue
Term:
Since
Jan
2002
Chief Executive Profile:
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.
Officers for Fiscal Year
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Highest Paid Employees & Their Compensation
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Program:
CCF Pediatric Cardiomyopathy Research Grant Program
- Budget:
-
$50,000
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
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Children and Youth (infants - 19 years.)
Program Description:
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.
Program Long-Term Success:
The goal of CCF’s grant programs is
to advance medical knowledge of the basic mechanism of the disease and
to develop more accurate diagnostic methods and improved therapies for
children affected by cardiomyopathy.
For a listing of awarded grants, visit: http://www.childrenscardiomyopathy.org/site/grantsawarded.php
Program Short-Term Success:
Many of CCF's funded investigators have gone on to received additional funding to support their researach. Also, CCF funded studies have resulted in more than 59 publications in scientific journals and 27 presentations at national scientific sessions/medical conferences.
Program Success Monitored by:
CCF's medical advisors
Program Success Examples:
CCF has committed more than $1.5 million to research and treatment initiatives
and funded more than 22 studies at top medial centers such as Columbia
University, Boston Children’s Hospital, Cincinnati Children’s Hospital,
Baylor College of Medicine, and Toronto Hospital for Sick Children,
just to name a few.
Program:
CCF & American Heart Association Pediatric Cardiomyopathy Joint Research Award
- Budget:
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$70,000
- Category:
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Diseases, Disorders & Medical Disciplines
- Population Served:
-
Children and Youth (infants - 19 years.)
Program Description:
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.
Program Long-Term Success:
Program Short-Term Success:
Program Success Monitored by:
Program Success Examples:
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.
Volunteer Needs
CCF is always in need of volunteers. We are seeking volunteers with specialized skills in graphic design, writing, administration or industry experience in law, development, publicity/public relations and/or marketing/communications.
Request for In-Kind Contributions
In-kind contributions of printing services, office supplies or items for our annual silent auction would be of particular interest.