SBA Launches Grassroots Program at National Conference

At its 38th National Conference, the Spina Bifida Association (SBA) launched a new grassroots program, called “SPEAK for Spina Bifida." SPEAK stands for Spina Bifida Education, Advocacy, and Knowledge and the program is designed to help YOU, Spina Bifida’s most important advocates, have your voice heard on Capitol Hill. 

Advocacy is one of SBA’s top priorities and, since our founding, we aggressively promote and pursue initiatives to advance the health and the well being of those living with Spina Bifida through advocacy and legislative efforts. SBA encourages participation in advocacy from all those affected by Spina Bifida.

Your emails and letters were essential to our legislative victories over the past several years. In fact, in 2002, a major victory was achieved on behalf of the over 166,000 Americans who live with Spina Bifida when the National Spina Bifida Program was established at the Centers for Disease Control and Prevention's (CDC) National Center for Birth Defects and Developmental Disabilities (NCBDDD). For the first time, our nation created a comprehensive, federally funded programmatic initiative to address primary prevention and begin vital work to improve quality of life and reduce the health complications for those affected. 

As part of our advocacy efforts every year, SBA pursues annual federal funding for the National Spina Bifida Program and the NCBDDD to ensure that both the Program and the Center have the resources necessary to reduce and prevent the challenges associated with Spina Bifida. Many of you have answered our call for action in the past when we sent out an alert – emailing your Member of Congress, asking for funding or support of Spina Bifida and Spina Bifida programs.

So you may be wondering – how is the SPEAK program different from the advocacy and grassroots work SBA has been doing for years? It’s simple – SPEAK is about taking advocacy to the next level.

SPEAK will employ all the traditional methods of advocacy you’re familiar with – postcards, emails, and calls to your Members of Congress. In addition, SPEAK will teach you how to use new methods of advocacy, such as Facebook and Twitter, to get your message to Capitol Hill in new and exciting ways!

Some of the most important advocacy can be done right at home - not just using a computer, but meeting with your Senators and Representative (or their staffs) in their local offices. Many Members also hold town hall meetings during congressional recesses. These are excellent opportunities to have face-time with your Members without traveling to Washington, DC. SBA wants to help make these advocacy efforts as easy as possible for you! With SPEAK, you’ll have access to talking points, tips on how to secure a meeting, advice on how to write or call your Member of Congress, guides on what to expect from a town hall meeting, fact sheets on Spina Bifida and more.

The goal of SPEAK is to increase both the quantity and quality of outreach to Congress. With budget cuts looming, no federal program is safe from cuts – or worse, elimination. Spina Bifida has amazing advocates and with SPEAK, you will have all the resources you need to take your advocacy one step further. We encourage you to please sign up for SPEAK and tell your loved ones to join as well! Together, we can ensure that the Spina Bifida and the National Spina Bifida Program receive the necessary funding to keep impacting lives in a positive way for years to come!