Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Ask Congress for More Research and More Data Collection for Congenital Heart Disease

Last year after I published Immortal Bird, I was contacted by an impressive group called Adult Congenital Heart Association . They asked me to join them in Washington DC to help lobby Congress for more funding for congenital heart disease (CHD).

CHD is the most common birth defect in the U.S. and a leadinng cause of death in infants. Damon was afflicted with CHD and I knew only too well how little research and data was available for families grappling with this condition. Today there are over 2 million people in this country who live with CHD.

I was happy to go to Washington DC in March 2012 and to meet with various members of Congress to ask them to support more research through the National Institutes of Health and more surveillance and data collection through the Centers for Disease Control. I also gave them copies of Immortal Bird and told them Damon’s story.

This week on Tuesday March 19 there was another Lobby Day for CHD but unfortunately I could not attend due to a Board meeting in New York. However, the need is just as acute as ever for more NIH and CDC funding, and we are also asking members of Congress to join the Congressional Congenital Heart Disease Caucus.

The federal government is currently functioning under a continuing resolution at 2012 funding levels, due to expire at the end of this month, when the government will then run out of money. The House of Representatives approved its version of the bill last week and now Senator Tom Harkin included an ammendment to the Senate version that preserves life-saving NIH research for health issues and CDC funding specifically for congenital heart disease. Those who understand the critical nature of this issue should contact their Representative and ask him or her to support more research and more data collection for CHD and to join the Congressional CHD caucus.

For more information, please contact Amy Basken, Public Policy Manager at the Adult Congenital Heart Association: abasken@achaheart.org.

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Doron Weber on Immortal Bird Aftermath

Doron Weber on Immortal Bird Aftermath

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