People diagnosed with FTD and care partners often call the HelpLine with questions about brain donation.  The decision to participate in brain donation is very personal, and every person should have the space to make the decision that is best for them and their family. Brain donation can be a difficult topic to consider and discuss. For those interested, brain donation is a way families can have the opportunity to obtain a confirmed diagnosis and support FTD research. Scientists need access to the brain tissue of people who have passed away from FTD, as well as control samples, to learn about the biology of FTD. This is critical to develop treatments and diagnostic tools that target the microscopic pathology that causes FTD.

Depending on where your family is in the FTD journey, one of the most beneficial ways to participate in brain donation is by enrolling in ALLFTD. ALLFTD is a NIA-funded observational research study with sites around the country. They can facilitate brain donation and are able to link clinical records to brain tissue, making the donation especially valuable for FTD research. For more information, click here. 

For families not enrolled in research, there are other options to arrange a brain donation. Two nonprofit organizations can help families with the process: The Brain Donor Project, affiliated with the NeuroBioBank, and the Brain Support Network. These organizations help families complete the necessary paperwork to register with a program and arrange logistics. Their websites include helpful resources to learn more about the process and frequently asked questions.   

The decision to participate in brain donation is one you should make as early as possible. Enrolling in a brain donation program early allows time to complete the necessary paperwork and make arrangements. Enrollment must be completed while the person diagnosed is still living, and donations to a brain bank must be completed within 24 hours after passing. Note that, although brain donation often provides families with a written report and pathological diagnosis, the report does not include genetic information. Visit our page on Brain Donation for a detailed overview. 

If you would like to speak someone or still have questions you can reach out to our HelpLine at 1-866-507-7222 or info@theaftd.org and a trained professional can answer your questions.