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About Spina Bifida Genetics Research Project

The Spina Bifida Genetics Research Project is seeking women of children with Spina Bifida to participate in a study that will help determine the causes of Spina Bifida and lead to its prevention.

Hi, my name is Kristal Louie.  I am a study coordinator for this exciting research project and I am an American and Canadian Board certified Genetic Counselor. 

Spina Bifida Genetics Research Project

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Spina Bifida: World's Healthiest Food

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Folic Acid:  The World's Healthiest Food

New York Times columnist and Pulitzer Prize winner Nicholas Kristof was recently in Honduras and what he saw there is the subject of his most recent column in the January 3 edition of the Times.  His experiences there compelled him to inform his readers about the wonders of folic acid.  Mr. Kristof met three babies with various forms of Spina Bifida.  It is an uphill battle for those of us in healthcare to inform the general public about the need for adequate folic acid prior to conception.  Props to Mr. Kristof! 

Mr. Kristof describes folic acid as a "miracle substance" and how there is "scarcely a form of foreign aid more cost-effective than getting [it] into the food supply."  We couldn't agree more.  He highlights the work of Project Healthy Children, an aid organization that fights vitamin deficiencies in Honduras and other poor countries.  Mr. Kristof also discusses other micronutrients (vitamins and minerals) that are likely lacking from many diets in Third World countries like Honduras and even from the diets in developed countries.

One aspect Mr. Kristof did not discuss is the role of genetics.  It's likely that our genetics play a large role in how our bodies use folic acid and, therefore, also the risk of having a baby affected by SB.  Trying to ensure that the general public consumes enough folic acid by fortifying foods is a great step.  Following the CDC guidelines of 0.4 milligrams daily beginning three months prior to pregnancy is a second great step.  However, our research suggests that 0.4 milligrams might not be enough for some women.  These women, due to tiny changes in their genetics, may require more than 0.4 milligrams - and may not even know it.  For them, diet alone isn't going to cut it.  Consuming supplements with the folic acid dose increased to 4 milligrams is required.   Currently the larger doses of folic acid are typically prescribed by a physician only if you have a family history of SB.  However, for some women, their genetics will determine that they very well may require 4 milligrams, even without a history of SB.  With our research, we hope to develop a genetic test which can identify women without any family history who need the 4 milligram dose of folic acid.

We applaud Mr. Kristof for bringing this critical issue to millions of people.  We would just like to remind everyone that in the case of preventing Spina Bifida and related birth defects, it's very likely that one size doesn't fit all. 

Kristal

www.sbgenetics.org

support@sbgenetics.org

 

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