There is a study happening right now and they are recruiting 2000 women with children who have SB and 1000 women with children that do not have SB. It's very easy to participate: complete a short online survey and then they will mail you a kit to complete a saliva sample. They are looking at possible genetic factors that cause SB. I don't know what the non-SB survey involves, but the SB one has the usual questions about height and weight when you got pregnant, ethnicity, folic acid (shocker, eh?), and a few other simple things like that. It's pretty painless and nothing we haven't been asked 100 times before.
Click here to participate: http://sbgenetics.org/sbgenetics/enrollment.html
I get so torn up over studies on SB-related things. Similar to the feelings I had after the prenatal study, I can't help regretting that, for us, it's too late. If they do find a genetic indicator, it won't help Kingsley. If they find anything related to cause, it won't help Kingsley. It's a done deal. That makes me frustrated and sad.
I remind myself though, that this is so vital not for me, not for Kingsley now, but for his future family, for Rachel and Cordelia and my two sweet nieces. If there is a genetic cause, I need to know for them. They need to know if they're carrying something, they need to know what they can do to prevent a NTD if/when they decide to have children. Kingsley is the first person in either of our families to ever have a NTD that we're aware of, but Jeff and I both have cousins starting families - what if there is a genetic link that extends to them? What if, what if, what if. We need answers. Folic acid is a big part of the equation, but it doesn't answer our big WHY.
So, if you can, click that link and participate. Spread it around and keep it going until they reach their quota.