eInsights - October 2010

National Spina Bifida Awareness Month Concludes

Millions of people from across the country have had the opportunity to learn more about Spina Bifida in recent weeks, as Spina Bifida Awareness Month activities have been strategically rolled out during October. These comprehensive efforts aim to better educate the general public about Spina Bifida, as well as provide exciting new resources for the 166,000 Americans with Spina Bifida and others affected by this birth defect.

Building Awareness
SBA reached people with its awareness message through a strong media blitz on television and radio and in New York City’s Times Square Plaza. As a result, more than 295 million people have learned about Spina Bifida and how it affects the livelihoods of the people who have this birth defect” since it is referring to all of the initiatives in total.

Radio Media Tour
SBA launched a Radio Media Tour on September 22 in various parts of the country. A total of 13 interviews were broadcast live. Two of the interviews were presented on national shows/networks – Ask Dr. DeSilva and Family Life Radio Network – and one appeared on a regional network, the Florida News Network. Local markets that aired interviews included Chicago, Illinois; Charlotte, North Carolina; Baltimore, Maryland; and Providence, Rhode Island. Early reports show that the radio tour has reached a cumulative audience of more than two million to date.

Click here to listen to Dr. Donna Zahra on WOCA-AM Health Matters Show.

Awareness PSA Campaigns
SBA concludes a successful public service announcement (PSA) campaign in New York’s Times Square that launched this summer to highlight Spina Bifida, its prevalence in the United States, and how it can be prevented. Three prevention spots ran on the CBS "Super Screen" in the heart of Times Square Plaza during the summer, and a final awareness spot runs this month. So far more than 195 million people have viewed the PSAs!

Spanish PSAs
SBA also developed “Tips for a Healthy Baby”/“Consejos para un bebé saludable,” a Spanish language folic acid awareness PSA that is being distributed to Hispanic television networks across the country this month. This PSA provides educational information to help Latina women protect their unborn babies against birth defects. It also demonstrates the importance of getting the best research-based information to all women of childbearing age before they are pregnant so that they are aware of the importance of taking a multi-vitamin with folic acid as a primary step toward the prevention of Spina Bifida and neural tube defects. Click here to view: http://www.youtube.com/SBAOrg#p/u/7/yMzhKjJQKsw

The PSA also encourages viewers to visit www.spinabifidaassociation.org to learn more and to obtain additional information in Spanish.

Support for the Spina Bifida Community
Brand-new online educational platforms and Web sites have been launched this month to provide teenagers, young adults, parents, and clinicians affected by Spina Bifida an opportunity to easily access information about issues that matter to them. All of these new resources are FREE.

Spina Bifida University
Spina Bifida University (SBU) is a new online educational tool offering both live and archived seminars on topics related to Spina Bifida. Session topics vary, from health-related seminars presented by medical professionals to employment or education discussions from subject matter experts. Individuals can log on to www.sbuniversity.org to register and become a part of this new online learning experience. Sessions are available 24 hours a day, seven days a week.

Within 24 hours of SBU’s launch, more than 250 people registered, and as of October 25, SBU logged more than 1,000 registrants. “The response so far has been very positive and says a lot about the desire out there to stay abreast of the latest in research, medical care, and prevention as it relates to living with Spina Bifida,” says Cindy Brownstein, CEO and President of the Spina Bifida Association.

SB Tween2Teen
SB Tween2Teen is a Web site for tweens and teens with Spina Bifida to discuss issues important to them. Complete with blogs, videos, real stories, fact sheets, and an Ask the Expert feature, the interactive site helps tweens and teens navigate the difficult road to adulthood which can be complicated further by this challenging birth defect. Youth with Spina Bifida can log onto www.sbtween2teen.org and become part of a new community.

“The Spina Bifida Community has a dynamic group of young, amazing individuals who are doing great things. This Web site opens a communications stream that allows them to contribute to each others’ lives, and it is our hope that this will ease some of the anxieties that they have about growing up,” says Cindy Brownstein.

SB Preparations
SB Preparations, a new transition-focused Web site launching in November, will provide parents, caregivers, and clinicians information and tips on helping a person with Spina Bifida achieve key developmental milestones that lead to greater success in adulthood. The tips are generated based on a questionnaire completed by the user and take into consideration the age of the person with Spina Bifida (pre-school, school-age, adolescent, or young adult). This tool can even be used by young adults themselves to help remedy some transitional challenges they may be experiencing.

“The CDC and the Spina Bifida Association developed a ‘life course model’ to map out the developmental stages and topics which were determined to have the most impact on a successful adult life. This site is the result of the work of that group,” says Cindy Brownstein.