Nate just got approved to participate in a research study being done by Dr. Elliot Sherr at the University of California, San Francisco. Dr. Sherr is THE GUY in the US to go to for DCC.
It is a genetic study for those affected with a disorder of the corpus callosum and they will get blood samples from you, DH and DC. You do not have to travel to SF to participate, however there is a travel stipend of $300 for DC and one parent escort ($600 total) You need to submit your DC's MRI to so that Dr. Elliot can review it and see if you qualify. The MRI will also be reviewed by a pediatric radiologist. We have been told that we will be informed of any results of testing done so that we can use it to help get services or follow-up care at home. If some of you have not had a micro-array done yet this is an opportunity to get one virtually free.
We are planning on attending the NODCC conference in Santa Clara, CA and we plan on seeing Dr. Sherr at that time. We may also get another MRI or I am hoping for a a DTI (diffusion tensor imaging) to map the neuropathways in Nate's brain. We are participating in hopes that in the furture this reseach can help our son with the development of new therapies if he needs them.
PM me if you want more information, the contact info or go here http://www.ucsf.edu/brain/callosum/callosum.htm