Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)

Shane died of a rare genetic mutation of his heart. The cause of his death is called Arrhythmogenic Cardiomyopathy.

This disease is very hard to detect. Shane had symptoms throughout his life but unfortunately, normal heart tests did not show this problem. In Shane’s honor, we have created a foundation to contribute funding for research and awareness.

What is it?


Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) is a form of heart disease that usually appears in adulthood. ARVC is a disorder of the myocardium, which is the muscular wall of the heart. This condition causes part of the myocardium to break down over time, increasing the risk of an abnormal heartbeat (arrhythmia) and sudden death.

Who is at risk?


Young men and women, particularly athletes, can develop this condition that typically goes undetected by standard heart tests.

What can be done?


In Shane’s honor, we have created a foundation to contribute funds toward research which is being conducted at Northwestern University. The aim to create an early detection screening test for young athletes.

In a perfect world, a simple early detection test could be administered during a student physical, for example. And one day, that could help identify genetically at-risk students.

In the meantime, there are combinations of tests available that should be discussed with your healthcare provider.

According to UCSF, “ARVC is diagnosed using the electrocardiogram and echocardiogram/MRI, careful family history, and genetic testing. After a diagnosis is made, people with ARVC may receive treatment, consisting of a mixture of lifestyle adjustment and medications.”

More Resources and Links


There is still much to learn about this rare disease which is the No. 2 killer of young athletes.

Here are some additional resources for further education.

Thank you for partnering with us to increase awareness about ARVC and to help make early detection possible.