The brain donation process begins before the end of life. Through compassionate education and awareness patients and their families learn of the importance of the donation of the brain. The study of the brain gives the family a definitive diagnosis, which is critical as 40% or more of FTD may be genetic. The tissue will be used to advance studies that are needed to determine markers to make diagnosis earlier. Also, the family will have the comfort of knowing that not all is lost when the research that will effect possibly future generations of their own family as well as others. Families who choose to donate will bear no financial burden. FTLDA will coordinate with the research hospital at the time of death and cover the costs of recovery and transport. The process does not interfere with funeral plans or viewing.
Donation of the brain is an enduring gift of research for future generations. Also, families will have the definitive diagnosis only possible after death.
What does becoming a donor involve?
Complete donation forms provided in your area or medical facility. Medical records that include a neurological report, imaging, and neurocognitive testing may be required. Be sure your family members are aware of your decision to donate. As family members, you may give your consent to donate at the time of death. Brain donation must take place within 48 hours after death. Having a family meeting to discuss this decision before the time of death is encouraged.
How does the donation process work?
After death the family may notify the funeral home of the decision to donate. The removal takes place with all care and respect and transported to the brain bank facility to be prepared for research. Funeral arrangements may proceed with viewing and open casket as there is no disfigurement of the body. Most religions support brain donation.
Is there a cost involved?
FTLDA will cover the cost up to $500 for FTD and related neurodegerative disease donations to the Southwest Brain Bank. Brain Donation provides a legacy of research and is recognized as the most precious gift. If you would like more information please contact us. All information is kept strictly confidential.
Southwest Brain Bank
The Southwest Brain Bank at UT Health San Antonio and FTLDA come together to provide a brain tissue repository in FTD and related neurodegenerative disease research.
The SWBB serves the following counties in Texas and New Mexico:
- Bexar County (San Antonio metro area)
- Neueces County (Corpus Christi metro area)
- Lubbock County (Lubbock metro area)
- New Mexico Office of Medical Examiner ( Albuquerque Metro Area)
To donate to the SWBB You may download and complete the forms available and please provide the following information: Neurological Report (from neurologist who made the FTD diagnosis) Imaging Neurocognitive Testing You may contact the Southwest Brain Bank for additional information. All information is kept strictly confidential.
Contact FTLDA and we will assist you with the process. FTLDA is proud they have assisted in organizing recent FTD brain donations to help further research and assist families with closure. Working closing with Dr. Paul Schulz, Director of the Dementia Program, Mischer Neuroscience Institute, Memorial Hermann Dementia Center and the donor families, we were able to organize processing and receiving of the donation at Memorial Hermann in Houston.