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.
10 ways to get ready for Spina Bifida Awareness Month

10 ways to get ready for Spina Bifida Awareness Month

October is Spina Bifida Awareness Month—a time to celebrate the hundreds of thousands of people living with Spina Bifida. Every October, we share community stories that challenge us to raise more awareness and support around those living with Spina Bifida.  As a community, we can do this by raising awareness about Spina Bifida either in …

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Surgeries and Surgical Care Outcomes in Spina Bifida from the National Spina Bifida Patient Registry

Surgeries and Surgical Care Outcomes in Spina Bifida from the National Spina Bifida Patient Registry

August 29, 2018: Important study released by the National Center for Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control (CDC) on Surgical Procedures. In this study, appearing in Pediatrics, CDC scientist and other researchers describe the lifetime occurrence of common surgeries and four key health outcomes in individuals with Spina Bifida. …

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An Inside look at SBA Leadership Week

An Inside look at SBA Leadership Week

Last week, SBA hit the road and traveled to Phoenix for the 12th annual Leadership Institute. The Leadership Institute began as a natural progression from years of Chapter development programs and has unfolded as a wonderful tradition that SBA finds key to its success. Chapter Executive Directors, Board members, Advisory Council members, Executive Directors, SBA …

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Life Comes Full Circle

Life Comes Full Circle

It’s December 14, 1959, less than twenty-four hours after the birth of our first child. Thomas Edmund Baroch sleeps peacefully in the nursery of Albany General Hospital, unaware of the future chaos and challenges he, and our family, will face…

Tips to Protect Your Skin

Tips to Protect Your Skin

Skin breakdown is a frequent issue for individuals with Spina Bifida. This can be due to sensory loss, immobility, wheelchair use, excessive moisture due to incontinence or perspiration, bony deformity, obesity, and/or executive function challenges. In the 2015 paper “Pressure Ulcers in Spina Bifida,” National Spina Bifida Patient Registry (NSBPR) data was used to explore …

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Is Your Catheter Made with DEHP? Find Out!

Is Your Catheter Made with DEHP? Find Out!

Is your intermittent catheter made with a chemical called DEHP? It’s time to find out! On March 1, 1987, after a popular voter initiative was approved, the state of California created a comprehensive list of “Chemicals Known to Cause Cancer or Reproductive Toxicity.” Because of this legislative action, Proposition 65 labeling came into effect. You’ll …

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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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