By Jonathan Castillo, MD, MPH Texas Children’s Hospital Reflecting on the large amounts of great discussions that took place in March at the Third World Congress on Spina Bifida Research & Care regarding aspects of SB care, the adolescents’ journey into autonomy and adult-centered care echoes in my mind. Thanks to strong partnerships between families... Continue Reading →

Pain really gets in the way. It can cause one to stop moving quite so much, to avoid going out and participating in normal activities of daily living; it can trigger emotional reactions and contribute to feelings of depression and hopelessness; and it can make one angry and irritable. In other words, pain can significantly... Continue Reading →

At a certain age, kids will be the first to tell you that they want more freedom, and more independence, especially as they head off to school. For many children who have Spina Bifida, part of that sense of independence includes being able to take care of their health regimen themselves. When using a catheter,... Continue Reading →

By now, I hope that you have read about the work that the Spina Bifida Association (SBA) has been engaged in recently. We shared about the success of the Third World Congress on Spina Bifida Research and Care, the work of the National Resource Center to help people find answers to the puzzling questions they... Continue Reading →

Whether on our own or with partner organizations, SBA has visited more than 50 offices on Capitol Hill this year, working to make sure that the needs of people living with Spina Bifida are known to our country’s lawmakers. Here is what we have been working on: The Fight for Health Care for People with... Continue Reading →

Through SBA’s efforts, millions of people have received vital information about Spina Bifida and how it affects those who live with it. Here are just a few of our recent education and support initiatives: Education Days In May, more than 45 people attended SBA’s Education Day in Baltimore, MD at Kennedy Krieger Institute. Covering topics... Continue Reading →

Have you been wondering what we've been up to lately? Or wondering what's been going on in the world of research? Since 1973, research has been an important part of SBA’s mission. We’ve been promoting scientific investigation into the intricacies of Spina Bifida and encouraging young investigators to enter the field. Since 2008, SBA has also... Continue Reading →

By Jeff Kinney  As a child, one of thing things I missed most was camp – not camp specifically, so much, but the cherished sense of independence that only comes from living away from your parents. Spina Bifida camps weren’t nearly as common then, and “regular” camps presented all sorts of obstacles that, collectively, seemed... Continue Reading →

How well do you remember the moment? You looked up and saw a frozen look on your doctor's face and all of the sudden the whole world stopped and became a blur around you.  A pit that had been sitting in the bottom of your stomach slowly started to make its way up and your head... Continue Reading →