Advocacy for Congenital Heart Disease
Music, Health Care and Advocacy for Congenital Heart Disease
Gil Wernovsky MD and Tom Karl MD organize the Collective, and together work with charities and patient groups that benefit children and young adults with heart disease. Congenital Heart Disease affects 1 in 100 children, is the leading cause of death from birth defects in infants, and is more common than juvenile diabetes, cystic fibrosis and all forms of childhood cancer—combined. Over 11,000 children under one year of age require open heart surgery in the US alone, many of whom must stay in a hospital setting for weeks to months.
One of the missions of the BBSC is to support the children and their families in a “holistic” fashion. In addition to performing open heart surgery and other high-tech and intense treatments in our ‘day jobs’; we support grass roots organizations who provide aid and support to families going through the toughest times of their lives. Originally inspired by the efforts of Mona and Seth Barmash from The Congenital Heart Information Network (tchin.org) and Spencer’s Fund (www.tchin.org/spencersfund/), proceeds from our recorded music and performances will directly benefit important efforts not traditionally covered by medical bills: social services, care packages, child life, financial assistance for families far from home, and important therapies for hospitalized children (including music!).
While great strides have been made in caring for children with heart problems, many of which were fatal just 1-2 generations ago, there remain many questions about longer term outcomes. How will the children fare as they go through school? What are the challenges they will face? What are their strengths, and how may these be improved? The BBSC remains committed to helping to answer these questions: by tirelessly pursuing improved treatments in our ‘day jobs’, and by using our musical resources and international networking to support research aimed at improving quality of life for children and young adults with CHD.
Our new album: "Home. Tonight. Forever." is now available! See our home page for details!
Gil
Tom
