Category: Uncategorized

Growing Up with Doctors: A Mother’s Reflection on Physicians, Healthcare Teams, and a Lifetime with Spina Bifida

Growing Up with Doctors: A Mother’s Reflection on Physicians, Healthcare Teams, and a Lifetime with Spina Bifida

By Marsha Miller No one ever said: “You have given birth to a beautiful baby boy.”   I never received a hospital birth picture.   Instead, I was placed in a private room, a time when birthing mothers shared a room, while doctors and nurses spoke in whispers and tiptoed about.   I asked if my baby was ok, and the …

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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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SBA: Research in Action

SBA: Research in Action

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 …

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