Dear HelpLine,
How do we learn more and start the process of arranging a brain donation for FTD research?

Brain donation can be a difficult topic to consider and discuss, and every family should have the space to make the decision that is best for them. 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 and from healthy volunteers to learn about the biology of FTD. This access is critical to developing treatments and diagnostic tools that target the microscopic pathology that causes FTD.

AFTD offers a detailed overview of donation and the process involved on the brain donation page of our website.

Enrolling in a brain donation program requires preplanning to ensure the necessary paperwork and arrangements are made. One way to participate in brain donation is if the person was a participant in an ongoing research study at an academic research center. Depending on where your family is on the FTD journey, enrolling in ALLFTD can be a valuable way to contribute to FTD research and participate in brain donation. ALLFTD is a National Institutes of Aging (NIA)-funded observational research study with sites around the country. ALLFTD staff 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, visit ALLFTD’s website.

For those not enrolled in research, there are other options to arrange a brain donation to support FTD and neurodegenerative research. 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, and their websites include helpful resources to learn more about the process.

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.

If you would like to speak to someone or have additional questions, you can reach out to our HelpLine at 1-866-507-7222 or info@theaftd.org.