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 such as bowel & bladder incontinence, sexuality & fertility, bones & joints, and tethered cord & shunts, the day was a huge success. The highlight was our new Adult Discussion Panel, which included four adults speaking about what it’s like living day-to-day with Spina Bifida.

There are additional Education Days coming up in August in Tennessee and California and in September in Michigan and Utah. SBA is also looking to reschedule its North Carolina Education Day for some time in November. For more information on this series or to register, visit www.sbeducationdays.org.  

“Thank you very much for the hard work you and your team perform daily that bring about major victories for our community and emotional victories for individuals such as myself.”

-Quote from Baltimore Education Day attendee

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NICU Guide for Parents

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The Neonatal Intensive Care Unit (NICU) can be a daunting place for parents of newborns, especially parents of newborns with Spina Bifida. SBA recently worked with Colleen Payne, a parent of a child with Spina Bifida and volunteer with SBA of Kentucky and Connect2NICU, to develop “The NICU Experience: Questions from Parents of Babies with Spina Bifida.” This pamphlet offers parents guidance every step of the way from dealing with the news of a Spina Bifida diagnosis to what to pack for the NICU to the various health care specialists who will care for and visit their baby at the hospital. SBA will be distributing this guide through its networks in the months ahead.

National Resource Center

Since January, SBA’s National Resource Center (NRC) has responded to more than 1,200 English and Spanish inquiries via phone, e-mail, and social media. Many of these queries expose critical gaps in access to multidisciplinary care for adults with Spina Bifida and reinforce the importance of raising awareness, not just that Spina Bifida is the most common, permanently-disabling birth defect in the U.S., but that it comes with a complex range of symptoms that affect every patient differently. Staff has spent hundreds of hours providing personalized responses to each inquiry, sending out resource materials, and helping to build connections among community members. If you have an NRC inquiry, please feel free to contact sbaa@sbaa.org or call 202-944-3285 Ext. 35.

______________________

SBA greatly appreciates your ongoing support. We couldn’t do what we do without you!

Click here to see the original release for this update.

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