Friday, November 6, 2009

I got this from the Strong's and thought I would let anyone know who hasn't read it. This is good stuff people! We are moving in the right direction. They are really thinking that there is a link here and it would be great for parents to be prepared in the case of SMA. In the future I hope that all pregnant women are given an ultrasound around around 10 weeks. You just never know that this runs in your family until it pops up!

Subject: SMA Research Needs SMA Moms

There is a new study that may help pave the way for SMA carrier screening to be offered to more women. Please help this study by calling Dr. Zadeh -- (650)721-1439. There is no blood work needed. There is no cost to you. Dr. Zadeh simply needs access to your medical records -- specifically the neck measurement of the fetus done around 10 weeks. Any mother who has or had a child with SMA can be part of this study.

From: Neda Zadeh, M.D. --

You are invited to participate in a research study on the possible association between Nuchal Translucency (NT) measurement and fetuses affected with Spinal Muscular Atrophy (SMA). Our goal is to determine whether there is an association between increased NT measurements and SMA. If so, diagnostic testing for SMA may be offered to women with increased NT and no evidence of a chromosome abnormality of the fetus. We are only recruiting mothers of children confirmed to have SMA by molecular testing.

Involvement in this study is entirely voluntary and confidential. It will require your permission to access particular medical records for both you and your child. Your participation will not involve invasive procedures such as blood draw or tissue sampling. There will be no monetary compensation for your participation.

If you are interested in participating, or would like to hear more about this study, please contact me at (650)721-1439.


Neda Zadeh, M.D.
Medical Genetics Fellow
Stanford University
Division of Medical Genetics


Bryan, Jaime, and Boys said...

Tara! I am so happy you found us, too!
What is this SMA all about that your daughter has? I'm so sorry you have to deal with that. She is ABSOLUTELY DARLING by the way! :)
We would be happy to have you pick up kits instead of shipping them. We are also going to be planning some scrap nights in the future where we will have our stuff. We'll have to let you know! Until then, Happy Scrapping and thanks for your nice message!

Jaime and Leah
Up in the Night Scrapbooking Kits

Bryan, Jaime, and Boys said...

Okay so I just googled SMA... I don't know much but atleast know what it is. I did read that it ranges from severe to mild. How is your daughter? That breaks my heart. I think she is so stinkin cute! What an angel! How old is she? I have two boys. One is 3 and the other is 16 months.