Tissue and Organ Donation

Tissue Donation
One of RSRF's first objectives was to expand the Rett blood/tissue collection at Coriell Cell Repository. Coriell has 37 cell lines available to researchers from Rett patients and family members. To date over 100 samples have been distributed to the scientific community for use in their research projects. Coriell accepts blood samples as well as tissue.

Please consider donating your child's blood sample. Also, if your child is undergoing any medical or surgical procedure (e.g., skin or muscle biopsy, endoscopy, scoliosis surgery) please consider donating tissue. Coriell will send you a kit and prepaid Fed Ex materials. Contact Monica Coenraads, Director of Research for RSRF, at monica@rsrf.org or 203.243.5733 for further details.

Organ Donation
The life of an individual with Rett Syndrome is difficult. There is no denying it. They are dependent on others for every basic need. Not only are they sentenced to a lifetime of silence, unable to share their desires, dreams or fears; but many face painful surgeries, intractable seizures and a host of other problems. Family members suffer right beside them. For many parents the idea of donating their child's organs seems like the final injury and the thought is too much to bear.

The reality is that this tissue is precious and the dedicated researchers investigating Rett Syndrome rely on it. We urge you to please consider the selfless and courageous gift of donating brain and other tissue to the research community.

If your family decides to go forward with organ donation please contact Dr. Philip Schwartz, Director of the National Human Neural Stem Cell Resource, as soon after death as possible. He can be reached anytime at 1.877 206.5236. He will make all the necessary arrangements directly with the pathologist. It is important to note that donating organs will not interfere with any funeral arrangements, including viewing. The NHNSCR will cover any expense related to the donation. Once the Rett Syndrome neural stem cell lines have been created, all precious tissue will be sent to either the Harvard Brain Bank or the University of Miami Brain and Tissue Bank for Developmental Disorders and will be shared with researchers worldwide.

Please contact Monica Coenraads, RSRF Director of Research, for more information at monica@rsrf.org or 203.243.5733.