Author: spinabifidablogger

SB Insights was created to help tell the stories of the Spina Bifida community represented by the Spina Bifida Association of America (SBA). SBA's mission is to promote the prevention of Spina Bifida and enhance the lives of all affected. The Spina Bifida Association (SBA) serves adults and children who live with the challenges of Spina Bifida. Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect. Its tools are education, advocacy, research, and service. Through its network of Chapters, SBA has a presence in more than 125 communities nationwide and touches thousands of people each year. Lives are changed by the programs SBA has created, the services provided, and the results of our advocacy efforts.
A Journey into Tomorrow

A Journey into Tomorrow

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 …

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TENS – Drug-free pain management option for people with Spina Bifida

TENS – Drug-free pain management option for people with Spina Bifida

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 …

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Catheter Guides for Children: Teaching Your Child to Self-Cath with Free Educational Resources + Backpacks

Catheter Guides for Children: Teaching Your Child to Self-Cath with Free Educational Resources + Backpacks

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, …

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An Important SBA Announcement

An Important SBA Announcement

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 …

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SBA Advocacy in Action

SBA Advocacy in Action

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 …

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SBA Education & Support Update

SBA Education & Support Update

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 …

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