gastroschisis

kayte, who works for avery's angels, is in spain for a medical conference. she's speaking about gastroschisis, and apparently it's going very well. the doctors at the conference are very interested in gastroschisis and a lot of research is being done. this excerpt comes from postings on the avery's angels facebook wall, by meg (the founder of avery's angels):

"We are so very grateful to the doctors in Spain, representing 19 countries worldwide, who all showed so much interest in AAGF & so much faith in the gastroschisis community that it brought us to tears...

like all medical research it [their research] is available but copywrote and protected, available within the field but still protected for liability and so forth reasons. However they have put feelers and are interested in possible ways of sharing what they can. Kayte called me and spoke to me for almost an hour on the 12 hour conference they had today. Yes, 12 hours of gastroschisis medical research and innovations by ranking doctors world wide! She was the last to speak. But apparently, they're much more progressive and proactive with research so far as causes and best practices on treatment and have developed miraculous ways of repairing the disease. They can reproduce the disease in rats and are close to finding reasons and sources for the disease. As you will remember, Omegaven was developed in France. They apparently are as overwhelmed as Kayte was about their research about our organization and what we're trying to do and have pledged to help get us all over to mothers and fathers and babies globally. They have pledge support so far as helping compile some information and making some research available to us but are very excited about getting the support and info about us distributed world wide.

In several countries represented, namely Brazil and Mexico, doctors operate on these babies for free and come up with programs to access their patients. The tragedy to us was that the US wasn't present while being invited and many surgeons had close ties and training with and in the US. Kayte was surprised as was I about the innovations, education and research they have done. And the passion and energy they have for our babies where it often feels like here everyone underplays it with "this isn't the worst birth defect you can get" and all of our studies are spin offs of some larger product based study or bi product of another study. I don't think either of us were prepared to hear just how enthused they are about the disease and finding the cause and best treatment. It was a true light in the tunnel for us as many of the places we have searched and approached don't seem as interested. Put it this way, I got off the phone with Kayte and pulled over to the side of the road I was sobbing; for the first time in over a year felt like my son hadn't passed in vain. I'm very much impressed and very touched!! I can't wait for her to return to share more."