Nearly 100 advocates from the Adult Congenital Heart Association (ACHA) and Mended Little Hearts (MLH) will converge in Washington, D.C., on Thursday, March 1, for Congenital Heart Lobby Day to speak out on behalf of both children and adults with congenital heart disease.
This year, advocates will be joined by author Doron Weber, who in his book “Immortal Bird: A Family Memoir,” describes his journey alongside his son Damon as he fights a losing battle with congenital heart disease. The book is an “Amazon Best Book of the Month” for February, has been reviewed in national publications like The New York Times, The Washington Post, People (3.5 of 4 stars), and Entertainment Weekly (A-), and has garnered praise from such authors as Toni Morrison and Richard Rhodes. Weber will be signing books at Politics and Prose (5015 Connecticut Ave. NW) on March 1 after lobbying efforts are complete.
“This book describes a remarkable boy with extraordinary gifts whose life was cut short by an illness that afflicts thousands but is so poorly understood, many medical experts tend to downplay it,” Weber acknowledges. His son’s roller-coaster journey highlights the devastating obstacles that people with the most severe types of congenital heart disease continue to face on a daily basis.
“I was shocked to learn that there was almost no basic research into the underlying mechanisms behind my son’s illness,” Weber says. “He was diagnosed with a disease that doctors knew very little about and then it was impossible to get good data on the best treatment options. That is why I feel advocating for more research and better sharing of information is so vital. This is an opportunity to give the children of tomorrow a better chance for a normal life and a healthier future than my son had.”
While research is improving and more people with congenital heart disease are reaching adulthood, like Damon, 1 in 10 will not make it to their 18th birthday. Congenital heart defects are the most common birth defect, yet there is no cure.
Weber will join other advocates from across the country to encourage lawmakers to fund much-needed research and surveillance for congenital heart disease. Specifically, advocates will be asking their legislators to continue funding the Centers for Disease Control and Prevention (CDC) in order to learn more about prevalence, barriers to effective care, survival outcomes and neurocognitive outcomes, as well as to increase funding to the National Institutes of Health (NIH) for congenital heart disease research.
In addition, this year advocates will be encouraging their Representatives to join the newly formed Congenital Heart Caucus, chaired by Congressman Gus Bilirakis (R-FL), to show their support and receive continued information about issues related to congenital heart disease, including what the federal government can do to save money and save lives.
“Nearly 40,000 infants each year are born with a congenital heart defect, which is one of the most common causes of infant deaths,” Congressman Bilirakis says. “I am honored to serve as Chairman of the Congenital Heart Caucus where I will remain committed to improving federal efforts to combat, prevent, and cure congenital heart defects.”