One critical area of research needed by our scientists is the study of human brain and other tissues affected with MLIV. These are collected after someone with MLIV dies and that person's family chooses to have select tissues "banked" in a research center where scientists can study them for the purpose of creating treatments. This process is know as Brain and Tissue Banking and it is probably one of the most important areas of research needed by scientists where they most require families' partnership.
This can be a challenging topic, but it is also one of the most lasting and meaningful contributions a family can make. Scientific treatments can be developed and tested in mice with MLIV, but mice are not people. Certain aspects of MLIV disease may only fully be understood by studying human tissue samples.
We have very few samples donated to science. The Wien family made this commitment to the Maryland Brain and Tissue Bank when their son, Brian, passed away only a few years ago. Their heroic action has already helped researchers. Most recently, the Owens/Graffam family chose this route for their beloved Ashley. Already these young people are bringing discoveries that scientists could find in no other way.
We ask every family to become acquainted with this organization. There is no charge for their extraordinary work. They work with people of many faiths. For more information and to register as a donor family, see The University of Maryland School of Medicine - Brain and Tissue Bank.