Identifying Genes Which Cause CDH

Identifying Genes Which Cause CDH
Massachusetts General Hospital
Boston, Massachussetts
Drs. Patricia Donahue and Lewis Holmes
Contact: Meaghan Russell, Clinical Coordinator, at (617) 726-0828

Currently seeking volunteer CDH families!

Hey Dawn, I have a different name or contact for this research. Her name is Lina Mitova- email:
Lina.Mitova@childrens.harvard.edu
She did a very nice write up to people involved with the research that I got last January. I believe the research is a cooperative effort between both Children's and Mass General. Jay Wilson was involved way back.

Have you heard about epigenome? Well they (scientist) are not saying that there is something that sits on the surface of genes called epigenome. This epigenome, depending on the environment triggers the genes to act a certain way. And the effect can take place up to three generations back. So for example, if a grandfather was fed well as a child, the grandchild has a better chance of being diabetic.

PBS (I believe NOVA) just did a whole study on this. I was pretty fascinating.

Tammy, that sounds really interesting. Do you have a link for that? I'd love to read more on it.

sure!

The episode is called "Ghost in Our Genes" here the link. You can check your local PBS channel for more air times.

http://www.pbs.org/wgbh/nova/genes/about.html

Wow, that is really interesting! Really gets you thinking about your life choices.

I just wanted to say that we are taking part in the UMass study. When Jack was born in August 2008 we sent them cord blood etc. The main contact person there (Meaghan Russull) is amazing. She's incredibly organized and we've called her a few times just for CDH related advice. I highly recommend this study to others.

Vicki
mom to Jack, LCDH/ECMO, 8/20/07

What all is involved in the study? How would someone like me, that doesn't have the cord blood, go about getting in on the study. Chuck and I have talked about this, but aren't sure where to start.

We took part in this study without the use of core blood. It was pretty easy. They sent us paper work to fill out, then all of us in the family sent in blood samples.

That was the fun part...not... :) our youngest daughter did not do well with the blood draw (she screamed the whole time ) We sent the blood back by Fed Ex and for quite a long time everytime Brittany saw the Fed Ex truck she would say that that was the truck that took our blood :)

That's funny! I have to laugh as my husband works for FedEx - not as a driver, though. We use nothing but FedEx for all shipments and deliveries if possible. Our FedEx man knows us all too well.