Summer Party 2012 Review

Over 200 Intermountain Spina Bifida Support Group members attended the annual summer party on Saturday, August 18, 2012 at the Gene Fullmer Recreation Center in West Jordan. Jeff Burley of Salt Lake County Adaptive Recreation, the event’s primary sponsor, arranged for: catering from Joe Morley’s BBQ and Coca-Cola; wheelchair tennis with Coach Dean Oba of […]

Killpack Family Gets Approval From Insurance For Fetal Surgery!!

Thank you to all those who wrote emails and called EMI or commented on abc4’s website. Read/watch the amazing follow-up story to the Killpack Family’s fight with Educator’s Mutual. http://www.abc4.com/news/local/story/Family-beats-insurance-company-for-babys-surgery/wOjzArdLpkOJDxPVZmQnqQ.cspx One more news story on this on KUTV: http://kutv.com/news/top-stories/stories/vid_1126.shtml

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Help the Killpack Family

Some of you may know the Killpack family in our support group. They have three children including their son, Davey with Spina Bifida. Now they are expecting their fourth, a girl who also has SB. They have been pursuing fetal surgery and they left for Houston 11 days ago. In that time their insurance has […]

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New SB Video Series – Children’s Hospital of Philadelphia

The Children’s Hospital of Philadelphia recently released a new Spina Bifida video series, covering the condition and the options expectant mothers have, including the breakthrough procedure that was part of the MOMS study. Click here to view the complete video series. Here is the hospital’s YouTube video which currently leads their Youtube channel.     […]

38th Annual SBA National Conference

Please join the Spina Bifida Association (SBA) for the 38th National Conference to be held at the Disneyland Hotel (Anaheim, CA) from June 26 – June 29, 2011. Children and adults with Spina Bifida, their families, physicians, nurses, and other clinicians have the unique opportunity to gain information on the latest medical care and network […]

PCMC Coordinators – transitions

Many Intermountain Spina Bifida Support Group members visit the Spina Bifida Clinic at Primary Children’s Medical Center in Salt Lake City. PCMC’s liason with the ISB support group, Tamara Atwood, will be leaving in February 2011 and Nina Goldstein will be taking her place. During the transition, they offered up for blog readers a few […]

Latinos and Spina Bifida

The Salt Lake Tribune recently produced an article about Latinos and Spina Bifida. Lucy Foret, a board member for our support group, agreed to be interviewed. In the article she boldly shares her story in an effort to raise awareness for the need to take folic acid as a preventative measure before pregnancy.  I encourage […]

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Spina Bifida University

It’s National Spina Bifida Awareness Month!  During this special month the *Spina Bifida Association website (www.sbaa.org) is offering FREE online seminars on a variety of topics.  This program is called SBU or Spina Bifida Univerisity.  Scroll down to the bottom of the page to find out how to participate. The following seminars on Education and […]

Swim Party in Review

Thank you to all who attended our annual swim party! The evening turned out to be a success despite messy weather.  The night began with dinner and visiting.  Paula Peterson and Michael Workman from PCMC both were in attendance.  Following dinner, the sports wheelchairs came out!  Adults, teens and children took turns trying out the […]

Living with Spina Bifida section

One of the sections of UtahSpinaBifida.org is entitled, “Living with Spina Bifida.” This section features videos from the Spring 2010 activity, “Transition into Adulthood Begins in Infancy,” hosted by the Intermountain Spina Bifida Support Group and the Spina Bifida Clinic at Primary Children’s Medical Center. Parents and specialists guide you through transitions from birth through adulthood. […]