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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Continence at Camp

Continence at Camp

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 …

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Coping With Teen Breakups

Coping With Teen Breakups

By Andy Leheny Oh, Young love… Researchers believe teen dating relationships are primarily based on infatuation. But regardless if the impetus is true love or infatuation, when your son or daughter copes with the end of a dating relationship it can be an emotional experience in which parental guidance can play a significant, helpful role. This …

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Medtronic Recalls StrataMR™ Valves Used to Manage Hydrocephalus

Medtronic Recalls StrataMR™ Valves Used to Manage Hydrocephalus

Recently, Medtronic voluntary recalled all unused units for the Medtronic Strata™ II/Strata™ NSC and StrataMR™ adjustable valves & shunts.  First, don’t panic! Medtronic is not asking that any existing patients with these shunts have them removed – so, don’t fret thinking you need to have a shunt replacement! Read the quick facts below and, if …

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Let Your Voice Be Heard

Let Your Voice Be Heard

By Sara Struwe, SBA President & CEO With over 20 Capitol Hill meetings down and Congress now in recess, SBA is planning our next steps for federal advocacy. It’s been a crazy few months trying to keep federal funding for critical Spina Bifida programs. A few weeks ago, the American Health Care Act (AHCA) was …

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How well will my child do in the long run?

How well will my child do in the long run?

By Dr. Jonathan Castillo Porter, MD, MPH Texas Children’s Hospital Whether it is a woman carrying her third pregnancy or a first time mother now holding her newborn infant, in a hundred different ways parents ask me this question.  They wonder how their child will ultimately function in today’s complex world. Although there is no …

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Self advocacy: the road to awesome

Self advocacy: the road to awesome

By Jeff Kinney The ability to guide one’s own life – self-advocacy – was a major topic during the 2016 Spina Bifida Association National Conference last Summer. The importance of self-advocacy relates directly to SBA’s increased emphasis on meeting the needs of adults with Spina Bifida, a highlight of the national conference held June 25-28 …

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