Guest guest Posted July 9, 2000 Report Share Posted July 9, 2000 Dear All, I currently work at Duke and got in touch with the coordinator of the study. She is not interestrested in people who have no other family members who have ACM. Only those with2 or more people. Apparently after the 20/20 show she was overwhelmed with " sporadics " (single family members affected. They are back logged but keep trying if more than one family member is affected with Chiari. Just my two sense! --- Kathleen Grigg wrote: > Hi Gang, > > Duke University's newsletter came in the mail > yesterday, and I know that > WACMA has had many new members join over the past > year. > > Duke University is trying to isolate a gene that may > be responsible for > CM1/S. They currently have over 150 families > participating and 60 of > those families have more than one family member that > has CM1, either > with or without Syringomyelia. > > The more families they have participate, the easier > the research will > become. From what I understand, it has been > difficult to reach the > listed number, but keep trying. 1- > > For our family, a history was taken over the phone. > I have CM1 and our > youngest son is borderline. They requested that > both of my parents be > living. My parents were then interviewed and we > were each sent a > package to take to our local hospital. We all had > our blood drawn and > it was shipped next day air back to Duke at no > charge to us. > > Dr. Milhorat had already viewed both mine and > 's MRI's, so he was > aware of our family connection. I still may have our > oldest son have an > MRI to rule out the possibilities of him having ACM. > > Funds for the project have been raised through the > Bobby Open > Fund, the National Institute of Health, and a > research grant from ASAP. > I think it is wonderful that ongoing research is > being provided for. > > It is a very easy process, and it is helping the > understanding of chiari > even further. I urge everyone to call the above > listed number and see > if they qualify for the study. > > Kathleen > > > > > Help section: /help/ > > NOTE: NCC refers to posts with No Chiari Content > > Unsubscribe Yourself: chiari-unsubscribeegroups > > > WACMA Home: www.pressenter.com/~wacma > > WACMA List: www.eGroups.com/group/chiari > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.