I've seen this and another opportunity to be a part of a research study looking into causes of
Spina Bifida and I've been reluctant to participate.
Why???
I don't know. Something about it made me feel like if I participated it would mean that I
didn't love Alex just the way God made him.
Crazy, right? I can't really explain it but thats just how I felt.
I've done a lot of growing these last few years. Alex and his brother have taught me more
than I could ever teach them about life and I know there's a million more lessons in store.
Alex is AWESOME just the way he is, and he is HAPPY in a way that just makes my heart
smile!!!! But I'm sure if he could tell me, he'd say he'd love to be Alex without that little part
of him called Spina Bifida.
So in hopes that future "Alex's" don't have to learn this life with Spina Bifida in it, I finally
completed my part.
Please help do the same :
Click on the link below.
The study is open to ALL mothers---with AND without a child born with Spina Bifida.
There are just a few on line questions to answer and then a simple saliva test will be mailed
to you if you meet the criteria.
Please just take a few minutes to hopefully be a part of some answers.
Thank you!!!
What Are 'Controls' and Why Are They Important?
The Spina Bifida Genetics Research Project needs both mothers who have a child affected by spina bifida and mothers who do not have a child affected a birth defect. In research projects, individuals who have the disease or condition are designated "cases" and those individuals without the disease or condition are designated "controls". For this study, mothers who have a child with spina bifida, and mothers who do not have a child affected by a birth defect will be the controls. Our research project will compare the genetic profiles of the cases to the genetic profiles of the controls. Statistical analysis is used to determine an association between specific genetic factors and the occurrence of spina bifida.
4 comments:
I just filled out the survey!
I will check it out. You shouldn't feel bad. Everyone knows how much you LOVE both boys..... just the way they are.
Ah, I just posted about this today too. I feel the same way - kind of torn about the studies. It doesn't help us out any and the only outcomes are going to be: 1. something about me caused this or 2. they still have no clue. I'm not sure which is the better answer. BUT one day my kids might need the answers, so that's why I think it needs to be done. Ho hum.
I’m interested in participating in this. My son has myelomeningocele. I’ll fill out the survey and then hopefully take part in the study. This reminds me of the FS study done a few years ago before I had children. Always up for helping direct the focus of research on this complex birth defect.
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