Children's Cardiomyopathy Foundation
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May 2011

Dear CCF Family Member and Supporter,

My name is Stephanie Ware, and I am the co-director of Cardiovascular Genetics at Cincinnati Children’s Hospital Medical Center. As part of my clinical activities, I regularly see children in our cardiomyopathy and heart failure clinic, and families always ask Why did this happen? and Do I need to worry about my other children? These are hard questions to answer because so little is known about the causes of this chronic heart disease in children. Even after decades of diagnosing children with cardiomyopathy, two-thirds of patients still do not have a known cause.

However, since the Children’s Cardiomyopathy Foundation (CCF) was formed, there has been much progress in the field of pediatric cardiomyopathy. Through CCF’s grant program the number of research studies have increased three-fold leading to more published papers and greater focus on the disease in the medical community. As a CCF grant recipient, I know the importance of CCF’s support. In my current genetic research,“Genes and Modifiers in Pediatric Cardiomyopathy,” we found a cause for more than 60 percent of the studied cases and discovered that in more than 15 percent of children, the disease is caused by more than one genetic mutation. We are also beginning to understand some genetic changes that modify or alter the severity of cardiomyopathy. To finally have answers for parents is incredibly rewarding.

We are making great strides, and with more funding we can develop clinical genetic testing that is specific to children with cardiomyopathy. This would allow physicians across centers a consistent way to screen for the most common causes of pediatric cardiomyopathy. This development will have far-reaching implications leading to more targeted therapies and accelerated research on the disease.

My research could not have been done without your support of CCF’s research initiatives. Cardiomyopathy is a rare disease that often runs in families. By identifying genetic risk factors,we can impact prevention, early management and disease course. The research funding that CCF provides is critical to improving therapies for not just one individual but for many generations to come.

Sincerely,

Stephanie Ware, M.D., Ph.D