In November 2006, our daughter, Lindsey Beechwood, after experiencing heart­ related symptoms and undergoing a complex series of tests and evaluations, was diagnosed with ARVD (arrhythmogenic right ventricular dysplasia, now more commonly referred to as arrhythmogenic cardiomyopathy), a rare and progressive heart disease.

A few weeks later, Lindsey received an implantable cardioverter defibrillator (ICD), along with appropriate medications, to reduce her risk of sudden cardiac death and to correct her heart rhythms. Lindsey was 21 years old.  She continues to do well with her diagnosis.

Arrythmogenic cardiomyopathy, or ACM, is also referred to as ARVD, ARVC/D and ARVC.  ACM is a potentially lethal disease that affects young people in the prime of life.

ARVDHeart for Hope was created to increase awareness of ACM heart disease as well as help raise funds for the ACM research program at the University of Arizona Sarver Heart Center in Tucson, AZ to facilitate the detection, treatment and prevention of this disease. The research program at the University of Arizona also aims to assist physicians in making the diagnosis, to learn about the genetics and molecular basis of ACM, and ultimately find out how to prevent this disease from progressing. In the future, researchers hope to be able to detect ACM even earlier, treat it without the use of an internal defibrillator, and/or use one’s own stem cells to regenerate their own heart.

Also, since 2011, ARVDHeart for Hope expanded their mission to advocate AEDs, or automated external defibrillators, in all schools to help prevent sudden cardiac death in children and adults who have not been diagnosed or are misdiagnosed with cardiovascular disorders.

ACM patients, like Lindsey, believe that with continued research, we are getting closer each day to unlocking the mystery behind ACM. Ongoing, aggressive research is critical to improve the lives of those individuals diagnosed with ACM, and to provide medical breakthroughs and new treatment options for all ACM patients and their families who suffer from this disease. ARVDHeart for  Hope is dedicated to  the hope that one day a cure for this mysterious disease will be found.