News Release on Spina Bifida

FOR IMMEDIATE RELEASE

Contact: Amanda Darnley

March 31, 2009

(202) 944-3285, x15

adarnley@sbaa.org

Spina Bifida Association Holds Groundbreaking First World Congress
On Spina Bifida Research and Care

Orlando, Florida - The Spina Bifida Association (SBA) recently concluded the First World Congress on Spina Bifida Research and Care in Orlando, Florida. This international event brought together over 350 clinicians, medical professionals, and researchers in the area of Spina Bifida to discuss the future of care for this challenging and complex birth defect.


Anchored by keynote sessions delivered in each of the eight major disciplines involved in Spina Bifida, the Congress was highlighted by breakout sessions in which the work of over 150 scientists was presented.

“To date, very little research has been conducted on the many components of this complex birth defect. Recognizing this, SBA established this event so that work that is being conducted could be furthered and glaring necessities in the Spina Bifida research landscape could be recognized and addressed,” stated Joseph Giffels, SBA’s Research Director.

One of the most potentially impactful findings presented during the three-day Congress was a revised figure on the number of Americans living with one of the various forms of Spina Bifida. Preliminary findings from a study conducted at the Centers for Disease Control and Prevention (CDC) indicated that instead of the 70,000 figure which has been widely used, the actual number is closer to 166,000 living in this country with this challenging birth defect.

“While further quantitative evaluation needs to be done to support this finding, this research clearly demonstrates the prevailing need for more work to be done in understanding and managing Spina Bifida and its related conditions,” stated Giffels.

Sponsored in part by the CDC, the National Institutes of Health (NIH), and the Agency for Healthcare Research and Quality (AHRQ), the First World Congress also featured famed journalist Judy Woodruff delivering the Hal Pote Memorial Lecture, named for the founding President of the Spina Bifida Foundation who passed away in 2007. Woodruff, the mother of a son living with Spina Bifida, addressed the need for further funding to support research efforts as well as offered insight into the impact public policy development could make on these challenges.
Information about the First World Congress on Spina Bifida Research and Care, including abstracts for the majority of work presented, can be found on the event Web site at http://medicalconference.spinabifidaassociation.org.

The Spina Bifida Association is the nation’s only national voluntary health agency dedicated to serving the needs of the Spina Bifida Community. Its programs give hope and strength to more than 250,000 people whose lives are touched by this disabling birth defect. One of the SBA’s most vital functions is to communicate to the 65 million women of childbearing age the importance of daily folic acid intake to reduce the risk of neural tube defects such as Spina Bifida. For more information, visit www.spinabifidaassociation.org or call 800-621-3141.
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