When Eddie Yu and Lisa Yue lost their two sons, Bryan and Kevin, to cardiomyopathy, they faced not only their grief but also a long list of unanswered questions about their sons' disease. At that time, cardiomyopathy in young children was considered so rare that doctors did not have a clear understanding of how to evaluate or manage it. There were virtually no resources available for parents like Eddie and Lisa to guide them in coping with this serious and frightening disease. View their story on the Today Show.
In 2002, a year after their second son died, the couple set out to find answers and in turn create the resources they wish had been available to them. Establishing the Children's Cardiomyopathy Foundation (CCF) began with the hope of helping other cardiomyopathy families. At the time, Lisa and Eddie did not realize their early steps would signal the beginning of a far longer journey.
The Start of a Journey
The couple quickly discovered that not only were most laypeople unfamiliar with pediatric cardiomyopathy, but even doctors had little exposure to it. Because there were few cases and hardly any published findings on pediatric cardiomyopathy, pediatricians were not well trained to detect it, and pediatric cardiologists still struggled with how to evaluate and treat children with the disease.
In their quest for answers, Eddie and Lisa discovered that there were limited resources available to support those who wanted to study the disease. A DNA and tissue repository — crucial to understanding the genetic component — was non-existent. Instead, each researcher would have to spend years collecting enough patient samples to generate meaningful findings. A pediatric cardiomyopathy patient registry did exist, but there were insufficient funds to analyze the collected data. Seeing what needed to be done, Lisa and Eddie made it their mission to accelerate research and advance medical knowledge about the disease that had claimed their sons' lives.
The First Steps
The young organization began taking small and deliberate steps, first establishing a research grant program and then funding several studies using clinical data from the pediatric cardiomyopathy registry. Working with medical centers across the U.S., a central blood and tissue repository was set up to be linked to the patient registry, enabling researchers to identify genetic factors that influence clinical outcomes. To encourage more collaborative work among physicians and scientists, CCF organized scientific conferences to bring together leading cardiomyopathy specialists from the world.
The journey that started with just two people was soon joined by hundreds, and then thousands, of physicians, scientists and families all motivated by a common goal – to find causes and cures for pediatric cardiomyopathy. As research studies increased in number, size and scope, CCF’s patient support services and resources expanded in tandem. The Foundation worked with the top pediatric cardiomyopathy centers to develop the family resources and services that were greatly needed. In time, CCF created a variety of educational materials, established local support groups, started a community forum with more on-line resources and hired a full-time patient outreach and support manager to meet the needs of CCF's growing membership.
The Path Continues
Lisa Yue and Eddie Yu’s early steps helped transform pediatric cardiomyopathy from an overlooked disease to a condition recognized by the National Heart, Lung and Blood Institute, the American Heart Association, scores of medical centers and even Congress. Since CCF’s existence, there has been a three to four-fold increase in the number and dollar amount of pediatric cardiomyopathy studies supported by the National Institutes of Health, and the first-ever cardiomyopathy bill was introduced to the House of Representative and Senate as a result of CCF’s advocacy efforts. CCF also has become an invaluable lifeline to thousands of families worldwide, providing the information, resources and guidance they need.
CCF now has the momentum to make an even greater impact in the field of pediatric cardiomyopathy. It is the foundation's continued hope that more lives will be saved and that every child with cardiomyopathy will have the chance to live a full and active life. Until this vision is achieved, CCF will continue its purpose driven journey to extend and enhance life for those with pediatric cardiomyopathy.
For more information on CCF’s work, please see our Achievements page.