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Help & Support: How to Access Brain Donation  

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 and a trained professional can answer your questions.

Advancing Hope: Upcoming Perspectives in FTD Research Webinar - Brain Donations: Who, What, Where, When, and Why?

Brain donation is crucial in advancing the science of FTD. But navigating the donation process can be complicated. How does a person donate their brain, and to whom? When is this decision best made? And why is the brain such an important resource for FTD researchers? In this Perspectives in Research Webinar, presented jointly by AFTD and the FTD Disorders Registry, Dr. David Irwin and Dr. Lauren Massimo of the University of Pennsylvania will join other experts to answer these questions and more. They will also explain how brain donation helps move FTD research forward, and guide you through the donation process.

By attending this webinar, you will:

  • Understand how brain donations make strides toward new FTD treatments.
  • Recognize the importance of discussing brain donation early in the FTD journey.
  • Identify the options available for pursuing brain donation.
  • Learn the important steps in the brain donation process.

Friday, March 17, 2023
3 p.m. ET (noon PT) 
This webinar is approximately 60 minutes long. Webinars typically fill up quickly and you must register for this event. Secure your spot today!

Click Here to Register

A recent study published in Health Affairs that makes key recommendations for paying for comprehensive care for FTD and other forms of dementia. 

An opportunity to connect, learn, and engage at AFTD's 2023 Education Conference in St. Louis, MO. Click here to learn more

Your chance to join AFTD at an upcoming race in 2023: * Limited number of guaranteed entries available. Please contact to secure a spot.

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The Association for Frontotemporal Degeneration
2700 Horizon Drive, Suite 120
King of Prussia, PA 19406