Heart research illustrationBefore Cain Clinkscales was born, his parents found out he was missing a main chamber in his heart. He’d need three open-heart surgeries.

“Our son is alive today because of research done in the past,” said Cain’s mother, Catherine Clinkscales. “But his future is unknown.” More research is needed, she said, to ensure a healthy future for children with congenital heart defects.

The American Heart Association and The Children’s Heart Foundation will fund an additional $20 million for research on congenital heart defects through 2021, the groups announced Monday.

The AHA and CHF are currently funding $2.5 million for heart defect research through 2016.

“Together, we hope to build a world free from congenital heart disease,” said William Foley, executive director of CHF, a nonprofit with 15 chapters nationwide.

About 40,000 American children are born with a heart defect each year. Recent advances in diagnosis and treatment have made it possible to correct many of these defects.

AHA CEO Nancy Brown said the goal of the collaboration is “to ensure that we are making the needs of this most vulnerable population paramount in the research community and encouraging even more scientists to find innovative ways to help people with congenital heart defects live longer, healthier lives.”

The AHA and CHF collaboration also supports parents of children with congenital heart defects.

“Our doctors were wonderful and our family and friends were very supportive,” Clinkscales said, “but we didn’t have access to other families who were going through the same thing.”

Through the AHA’s Support Network, an online community that includes a section dedicated to congenital heart defects, families can find support and advice from other parents and caregivers.