The Children’s Cardiomyopathy Foundation: A Path from Heartbreak to Healing
Cardiomyopathy is a silent killer characterized by abnormalities of the heart muscle. There are several forms of the disease, including hypertrophic cardiomyopathy, which is estimated to occur in 1 in 500 people. When the walls of the heart differ from the typical structural blueprint laid out by the body, myriad complications can result, including arrhythmias (irregular heartbeat) and even sudden cardiac death — the first and only symptom to appear before claiming a life.
Cardiomyopathy is especially problematic in youth who play competitive sports. It is a leading cause of sudden death in young athletes. For those with an underlying heart condition, vigorous physical activity can put excess strain on the heart and trigger dangerous arrhythmias.
Eddie Yu and Lisa Yue experienced firsthand the devastation cardiomyopathy can wreak. The couple tragically lost their two children at ages 11 months and 9 months to cardiomyopathy. Their oldest child passed away suddenly and without warning signs of the disease. Their second child died waiting for a heart transplant after having been diagnosed with the disease. Through medical screening and genetic testing, the family learned of an inherited predisposition for cardiomyopathy. In memory of their two sons, the couple decided to establish the Children’s Cardiomyopathy Foundation (CCF) in 2002, which they manage to this day.
CCF is a national organization for children and their families struggling to cope with a cardiomyopathy diagnosis. It was founded in part to address the lack of patient awareness and physician preparedness that the Yu family faced at the time of their family tragedy. CCF was formed with the goals of stimulating and funding cardiomyopathy research, educating physicians and patients, increasing awareness of the disease, and advocating for affected children and their families. Since its inception, CCF has grown into a global community of families, physicians, and scientists that has raised more than 11 million dollars for research, education, and advocacy initiatives.
The medical landscape today is changing, and individuals are becoming more proactive in managing their health with the aid of affordable genetic testing. Whereas the community was once less aware of genetics’ role in determining disease presence, families can now gain insight by getting their loved ones tested to determine who may be at risk for inherited conditions. This trend toward prevention is often the key to survival.
The Olups, another CCF family, provide one such story of successful prevention through genetic testing. Gianna Olup was diagnosed with cardiomyopathy after she was accidentally hit by a lacrosse ball during a recreational match, and the subsequent medical examination uncovered the presence of the disease. After genetic testing determined she had left ventricular non-compaction cardiomyopathy (LVNC), other family members received genetic testing as well. Gianna’s mom and sister were also found to carry the LVNC mutation. Today, the family can take concrete steps to guard against a potential cardiac event, and Gianna is happy and healthy as a result. More about the Olup’s story of prevention can be found on CCF’s website, in a video entitled “Know Your Heart: Genetic Testing for Cardiomyopathy Families.”
The Children’s Cardiomyopathy Foundation continues to make a difference in the field of cardiomyopathy, providing answers, solace, and community to children and families in need.
Phosphorus is proud to support the Children’s Cardiomyopathy Foundation at the American College of Cardiology Scientific Sessions & Expo March 17-19 in Washington, D.C. Please visit Phosphorus Booth #2806 learn more about the organization, or visit the CCF website at www.childrenscardiomyopathy.org
Gianna (third from left) and mom (far right)
Left to Right: Michelle, Eddie, Lisa, Audrey (back row) Lauren, Brandon (front row)