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Trumping spina bifida

Bridge enthusiasts play to prevent birth defects
Story Photo

Back row: Rollins epidemiologist Godfrey Oakley with Sophie’s Voice Foundation cofounders Nicole Ari Parker and Boris Kodjoe. Front row: New York Times bridge columnist Phillip Alder, RSPH Dean James Curran, and bridge tournament organizers Brenda Shavin and Janet Edwards.

In the world of duplicate bridge, partners move from table to table to play different pairs of opponents. As Atlanta bridge enthusiasts Janet Edwards and Brenda Shavin well know, some opponents can be downright pesky when they foil your opening bid.

But in the midst of play nearly two years ago, Edwards and Shavin quickly warmed up to their opponents, Rollins epidemiologist Godfrey Oakley and his wife, Mary Ann. They agreed to have dinner to learn more about Oakley’s passion—reducing the number of babies born with spina bifida worldwide. By the end of the meal, Edwards and Shavin had volunteered to raise funds for the Center for Spina Bifida Research, Prevention, and Policy (CSB), which Oakley directs.

"When we play bridge, we don’t really get a chance to meet and mingle," says Edwards, a member of the Duplicate Bridge Association of Atlanta. "When we learned about Godfrey’s work with spina bifida, we really wanted to be involved."

This past spring, the two women co-chaired Godfrey’s Grand Slam Bridge Benefit, bringing more than 90 avid bridge players together on a Sunday afternoon at Rollins and raising nearly $40,000 to support the center’s work.

Before the rounds of bridge began, players listened as Oakley discussed his work to prevent spina bifida, received a lesson from New York Times bridge columnist Phillip Alder, and bid on chances to partner with bridge professionals at club, sectional, and regional games during a silent auction. Benefit players also met actors Boris Kodjoe and Nicole Ari Parker, founders of Sophie’s Voice Foundation. Named for their 9-year-old daughter who has spina bifida, the Atlanta-based foundation helped establish the CSB in 2012.

The center’s primary goal is an ambitious one: global prevention of spina bifida and anencephaly, another neural tube birth defect, by 2024. Currently, the prevention rate is 25%. Spina bifida occurs when a baby’s spinal cord and brain form improperly—just 18 days after conception—and can cause nerve damage, brain damage, and paralysis. Children with spina bifida often require 24/7 care. Anencephaly occurs when babies are born without parts of the brain and skull. In most cases, both birth defects can be prevented when women of reproductive age eat foods fortified with vitamin B9, or folic acid.

Oakley is credited with pioneering the effort to add synthetic folic acid to all grain products produced in the United States. Backed by strong scientific evidence and support from physician groups and the March of Dimes, Oakley’s team in the CDC’s Division of Birth Defects and Developmental Disabilities worked several years to convince the U.S. Food and Drug Administration to mandate folic acid as a food additive in 1996. As a result, a 40% reduction occurred in the number of babies born with spina bifida and anencephaly in the United States.

Since retiring from the CDC as division director in 1998, Oakley has continued to study, speak, and write about the need to fortify grains with folic acid in other nations. Approximately 60 countries now mandate folic acid fortification for one or more milled grains—flour, maize, and rice. More than 100 countries have yet to mandate grain fortification, resulting in 180,000 babies born with spina bifida and anencephaly each year.

CSB conducts research and plays an advocacy role by partnering with parents, physicians, and others to champion spina bifida prevention in their respective countries. The center also collaborates with the CDC’s National Center on Birth Defects and Developmental Disabilities, the Flour Fortification Initiative based at Rollins, and other groups to track and expand fortification efforts.

Oakley has developed quite a following in the course of his life and career. In bridge-playing circles, he goes by "vitb9doc," his moniker for playing online. In public health circles, he is known for working tirelessly so that mothers around the world give birth to healthy babies.

"Spina bifida causes as much disability as polio," says Oakley. "I’m a cheerleader for the prevention of spina bifida. I’m going to keep cheerleading as long as I possibly can."—Pam Auchmutey

Help Prevent Spina Bifida

Spina bifida causes as much disability as polio. Learn more about efforts to prevent this birth defect through Sophie’s Voice Foundation (sophiesvoicefoundation.org), the CDC (cdc.gov/ncbddd/spinabifida), and the Flour Fortification Initiative (ffinetwork.org). To make a gift, please contact Kathryn Graves, associate dean for development and external relations, at 404-727-3352 or kgraves@emory.edu.

The center’s primary goal is an ambitious one: global prevention of spina bifida and anencephaly, another neural tube birth defect, by 2024.

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