Friday, December 9, 2011


I received the following comment on my personal blog and I thought I would pass the information along...

Hi Mrs. Henn, 

I stumbled upon your blog, and reading a few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate. 

Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics. 

I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at and visit This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact. 

Warmest regards and happy holidays, 



Heather Weir said...

I got the same message. Sounds like a good study! It starts up again in January.

C. S. Beyer said...

Hi! This is Courtney Beyer! I have been contacting as many mother bloggers as possible! I have found over 130 mom's blogging about their family and child with Spina Bifida- Which I think is amazing! Please visit to learn more about the study as well as register early if you would like to participate! Please email me at with any questions or comments!

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