National Spina Bifida Awareness Month

NATIONAL SPINA BIFIDA AWARENESS MONTH -- (Extensions of Remarks - October 03, 2005)

SPEECH OF
HON. CHRISTOPHER H. SMITH
OF NEW JERSEY
IN THE HOUSE OF REPRESENTATIVES
MONDAY, OCTOBER 3, 2005

Mr. SMITH of New Jersey. Mr. Speaker, I rise today to remind my colleagues that October is National Spina Bifida Awareness Month and to pay tribute to the more than 250,000 Americans in the Spina Bifida Community, including family members and caregivers. There are an estimated 70,000 people in the United States who are currently living with Spina Bifida, the most common permanently disabling birth defect.

I am proud to be the Co-Chairman, along with Representative Bart Stupak, of the Congressional Spina Bifida Caucus and encourage all of my colleagues to join the caucus. Together we can help to improve the quality of life of those living with Spina Bifida and their families.

The Spina Bifida Association of America (SBAA) is the organization that has helped those living with and affected by this debilitating disease for over 30 years. The SBAA was founded in 1973 and is the nation's only organization solely dedicated to advocating on behalf of the Spina Bifida community. Through their almost 60 chapters in more than 125 communities, the SBAA brings expectant parents together with those who have a child who suffers from this disease. This interaction helps to answer questions and concerns, but most importantly it lends much needed support. The good news is that due to breakthroughs in research and improvements in health care and treatment, children with Spina Bifida are now living to become adults with Spina Bifida.

Together the SBAA and the SBA of the Tri-State Region work tirelessly to help the families of those living with Spina Bifida meet the challenges and enjoy the rewards of raising their children to adulthood. I would like to commend the local chapter of SBAA in my State of New Jersey for all they have done and all that they will continue to do. As we recently were reminded, in the wake of a natural disaster, people with disabilities are the most vulnerable. The SBAA chapter in my State of New Jersey is a partner in the SB Hurricane Emergency Lifesupport Program, which was established to help get vitally needed supplies to the estimated 10,000 people with Spina Bifida and their families who were victims of the hurricanes in the Gulf Region.

Spina Bifida is a neural tube defect that happens in the first month of pregnancy when the spinal column doesn't close completely. Spina Bifida is a birth defect that can happen to anyone. There are 60 million women at risk of having a baby born with Spina Bifida. Everyday, an average of 8 babies are affected by Spina Bifida or a similar birth defect of the brain and spine. Each year, about 3,000 pregnancies are affected by these birth defects. While we do not know the exact cause of Spina Bifida, research has shown that if a woman takes 400 micrograms of folic acid every day and before she becomes pregnant, she reduces her risk of having a baby with Spina Bifida or another neural tube defect by as much as 70 percent. The cause of the remaining cases is unknown, but it is believed genetics and environment may play a role.

Today, approximately 90 percent of all babies diagnosed with Spina Bifida live into adulthood, approximately 80 percent have normal IQ's, and approximately 75 percent participate in sports and other recreational activities. With proper medical attention and family care these people can live productive full lives with the assistance of braces and/or a wheelchair. There are breakthroughs every year that benefit the quality of life for those living with Spina Bifida. Research is the key to a better life for those who live with Spina Bifida. Our goals are to develop better treatments, better understanding of causes and new ways to prevent Spina Bifida.

The SBAA has many special events throughout the year to engender greater support for the Spina Bifida community. I congratulate them on occasion of their 17th annual Washington event for the media that is taking place this week. I again wish to thank the SBAA and its chapters for all of their hard work to prevent and reduce suffering for those 70,000 individuals living with Spina Bifida throughout the nation. We all owe a great debt to the SBAA for what they have done.

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