Anencephaly Study at Duke University Medical Center

11/13/2019

The Duke NTD study is heartbroken to learn of the passing of Dr. Tim George. Dr. George was a friend and colleague to our group. He worked with the late Dr. Marcy Speer to help establish the Duke NTD data set. Dr. George was beloved by the families that he worked with. He was also fiercely smart and admired by his many colleagues.

He is surely missed. Here's what we know about Dr. Tim George's death and the next head of pediatric neurosurgery at Dell Children's Medical Center.

10/24/2019

The Anencephaly Project is feeling grateful to have received a donation in honor of Shane Michael Haley from the Phillies!

This is an annual tradition where the Phillies hold an Anencephaly Awareness night. We thank the Haley family and the Phillies for their important education to the community and for their continued support of our research!

09/27/2019

Hi everyone! It has been awhile since we have posted an update. But we wanted to let you know that we are still working hard to find the genetic contributions to anencephaly and other forms of neural tube defects!

Just last week, Drs. Ashley-Koch and Erwin, as well as Madison Strain, our newest PhD student, attended the International Neural Tube Defects Conference in Boston. Attached is a picture of Madison standing by her poster.

The conference was a wonderful opportunity to connect with other colleagues around the world (as far away as Africa!) who are united in understanding the causes of neural tube defects.

11/27/2017

We are pleased to inform you that Dr. Laura Walker is running a marathon at Walt Disney World in January 2018 in memory of her daughter, Anneka, who had anencephaly. Laura and her husband, Carleton, lost Anneka in 2011. Laura has set up a YouCaring website, and our study is honored to receive the funds raised from this account:

https://www.youcaring.com/dukeuniversityneuraltubedefectsresearchfund-1005435

In addition to honoring Anneka, Laura is also creating a special shirt for the marathon which will include the names of children affected by neural tube defects. If you would like a name included, please visit the website prior to December 15.

Go Laura!

10/27/2017

The Duke Anencephaly team recently submitted a grant application to NIH. The grant would support exome sequencing of DNA from the study participants and allow us to do more work with zebrafish to understand the functions of the genes that contribute to anencephaly.

We also just returned from attending the American Society of Human Genetics conference in Orlando. We heard lots of interesting talks about study designs and analytic methods. So, we now have more ideas to try!

10/13/2017

For those near Duke, this lecture is directly relevant to the ethical issues of organ donation from babies with anencephaly

10/09/2017

Researchers have discovered a promising alternative to open fetal surgery for spina bifida repair. The team has developed an alternative approach to current in utero treatment for spina bifida: a minimally-invasive repair using a bioengineered material -- a reverse thermal gel (RTG) -- to cover the…

07/21/2017

https://figshare.com/articles/Maternal_occupation_and_the_risk_of_neural_tube_defects_in_offspring/5221462

We evaluated the association between maternal occupation and the risk of neural tube defects (NTDs) in offspring. Data for 491 nonsyndromic cases were obtained from the Texas Birth Defects Registry for deliveries between 1999 and 2009. We randomly selected 2,291 controls among all live births in Tex...

06/30/2017

Hi Everyone, it's Heidi. I just wanted to say what a honor it has been working with the anencephaly community over the last 10 years. Your partnership and commitment made my work possible and inspired me daily. Though I am changing jobs, you and your babies will always hold a special place in my heart.

06/16/2017

Ordinary cleaning compounds—used in ordinary amounts—create long-lasting risks of spinal and brain defects in a lab study

06/07/2017

A new treatment may be at hand for life-threatening neural tube defects.

06/01/2017

The 2017 Duke NTD Newsletter is now available,http://dmpi.duke.edu/files/ntd_newsletter_2017.pdf