You can help find the cause of NA
Patients and their families responded generously to the request in the last issue of NA News to support the essential research into neuroacanthocytosis with tissue donation. We are very grateful.
It is vital that we learn the effect of the disease on brain tissue, but this cannot be done during a patient’s lifetime. In cooperation with Munich University, local neurological research hospitals will develop patients’ case histories with regular examinations so that the progress of the disease can be related to the tissue taken after death. Through the database administered by Dr. Bader, the case histories will be available only to professional researchers and the identity of the patient is hidden. The tissue samples will be shared with research centres that now and in the future will carry out these studies.
The first step in joining this important effort is to find the closest research centre and then write a letter to your family doctor indicating your wish to participate in finding a cure for Neuroacanthocytosis through donating tissue. We are happy to help. Please contact Benedikt.Bader@med.uni-muenchen.de or firstname.lastname@example.org.