I am working behind the scenes to make sense of it all and figure out what it means for all of the families. I have seen some comments and I would ask that we not make this political and cause ill words or comments amongst each other or otherwise. As parents to children with special needs things happen that are out of our control. We adjust and move forward. What we need now if to figure out financial support so that maybe we can move forward with research and other avenues as it relates to HPE. When FFH formed in 2006 it was because funding was being cut to the NIH which prior to FFH had conferences. We formed and had a conference to replace what the NIH could no longer fund. We are now coming up on our 20th year in existence and are faced with the same challenge we faced in 2006. Now is the time for our families to unite again and make things happen. That is where my energy is at this time. Join me. (fb)

Good evening Families, We have been notified that the Carter Centers, including Nancy Clegg, are terminating all research and support related to Holoprosencephaly, effective immediately. Nancy Clegg has shared this news with us and is herself shocked by the sudden decision. As requested by the Carter Centers, her email and contact information have been removed from their website and ours. We assume that the Carter Centers will be notifying families currently receiving care or being followed by their clinic. Unfortunately, we do not have any further information beyond the cessation of their operations, and as a result, all research and support related to HPE provided by them is no longer available. We extend our best wishes to Nancy and those who have dedicated their careers to aid our children with HPE and their families. (fb)