eInsights - October 2008

SBA Leaders Visit Capitol Hill
By Ilisa Halpern Paul, Christa Natoli, and Jeremy Scott of Drinker Biddle & Reath

On September 19th leaders from the Spina Bifida Association (SBA) gathered on Capitol Hill as part of our ongoing efforts to increase awareness of Spina Bifida and educate members of Congress about the challenges people affected by Spina Bifida face everyday.  Twenty SBA representatives - board members, executive directors of chapters, and members of the Field Relations Committee - traveled to Washington, DC and visited offices of their Representatives and Senators to discuss how Spina Bifida impacts the 70,000 people nationwide and in the policymakers? districts and states. 

A total of twenty Congressional offices were visited - nine in the Senate and 11 in the House of Representatives.  The meetings were focused on the Congressional delegations represented among the visiting SBA leaders - Arizona, Colorado , Delaware , Indiana , Iowa , Kentucky , Massachusetts , New Mexico , Ohio , and Pennsylvania .  In each of the meetings, SBA representatives discussed the importance of efforts to prevent Spina Bifida through increasing awareness of folic acid consumption among women of child-bearing age while also taking action to enhance efforts to improve quality of life for individuals living with the condition.  Congressional staffers were informed that even though advances in medical treatments have increased life expectancy of those born with Spina Bifida, there are a host of new challenges to address, including providing health care and other supportive services to a growing population that is aging with this disability.

After providing background to staffers about Spina Bifida, SBA representatives asked their elected officials to: (1) cosponsor bipartisan resolutions in the House and Senate that recognize October as National Spina Bifida Awareness Month; (2) help spread the word among their constituents of child-bearing age of the importance of consuming folic acid prior to becoming pregnant; and (3) for those elected officials who are not members of the Spina Bifida Caucus, join the caucus to help increase awareness of Spina Bifida and lend support to programs and policies that improve quality of life for those affected. 

On the same day that SBA representatives were on Capitol Hill, hundreds of SBA constituents across the country responded to a call to action issued by SBA and wrote to their policymakers asking them to cosponsor the resolutions.  Having SBA leaders meet with policymakers in Washington and weighing-in by email from across the country has an incredible impact on our ability to achieve our public policy goals.  These efforts of SBA this past month left a notable impression on the minds of many on Capitol Hill.  As awareness of Spina Bifida increases among Congress and nationwide, increased funding for the National Spina Bifida Program, improvements in care and quality-of-life for those affected, and additional gains in prevention certainly will follow.  To learn more about SBA?s advocacy efforts, please visit www.spinabifidaassociation.org and click on How to Help. 

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eInsights is an electronic newsletter brought to you quarterly by the Spina Bifida Association