eInsights - April 2011

Spina Bifida Association Co-Hosts Congressional Briefing

On March 3, the Spina Bifida Association (SBA) joined with the March of Dimes to host a Congressional Briefing, “Healthy Beginnings – What You Should Know About Birth Defects.” The briefing was cosponsored by Congresswoman Lucille Roybal-Allard (D-CA) and Congressman Mike Simpson (R-ID), with the aim of educating congressional staffers on birth defects that affect more than 120,000 babies every year. The breakfast was standing room only, filled with congressional staffers eager to hear about cutting edge initiatives to reduce birth defects that impact infants, children, and families.

Leading the esteemed panel was Judy Woodruff, Senior Correspondent and Co-Anchor of PBS’ NewsHour, and the mother of a son with Spina Bifida. Ms. Woodruff gave the attendees a real life perspective on Spina Bifida, talking about her experiences raising a child with Spina Bifida – as someone who knew nothing of the condition before her son was born.

Dr. Coleen Boyle, Acting Director of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD), addressed the crowd and provided an overview of NCBDDD, its accomplishments over the past ten years, and its future direction. The briefing also featured presentations from Dr. Martha Werler, an epidemiology professor at Boston University and Dr. Beth Benedict, a professor at Gallaudet University.

Having Dr. Boyle address the congressional staff was of particular importance, given the current climate on Capitol Hill. After the November elections, there is a focus on government spending – in fact, Congress still had not finalized funding for this current fiscal year and threats loom for a government shutdown every few weeks.

With tightened purse strings, it’s more important than ever that congressional staff understand all that NCBDDD accomplishes and the immense importance of their work.. The National Spina Bifida Program is housed at NCBDDD and this year, SBA is seeking $6.25 million in fiscal year 2012 for the program. This level of investment will allow the program to continue its current scope of work, increase its folic acid awareness/Spina Bifida prevention efforts, further develop the National Spina Bifida Data Collection Initiative, and sustain the National Spina Bifida Resource Center – all efforts to support daily living activities for individuals affected by Spina Bifida.

Without education on the program and the lives it impacts, Members of Congress and their staff won’t fully understand what a cut – or outright elimination – of the National Spina Bifida Program would mean to the approximately 166,000 Americans living with Spina Bifida. One of the ways in which SBA works with Congress to educate Members and their staffs is through the Congressional Spina Bifida Caucus. A caucus is a group of members of the United States Congress that meets to pursue common objectives – in this case, enhancing the lives of those with Spina Bifida. You can click here to see if your Member of Congress belongs to the caucus. If your Member is not, please send them an email and request that they join. SBA has made it easy – just plug in your address on this page and the Web site does all the work!

SBA will continue its efforts to be involved in activities on Capitol Hill – such as this briefing – to help educate congressional offices about Spina Bifida. We hope you will join us by taking part from home – together we can make a difference!