Brain donation can help researchers better understand the causes of frontotemporal degeneration (FTD) with the goal of finding treatments and a cure. It can also give families a specific diagnosis. If you are considering donating a brain for research, the following resources discuss the general process, costs, and more.
The National Institute on Aging (NIA) is one of the 27 institutes and centers of the National Institutes of Health. It leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. Visit its website to access:
- A brain donation information page with answers to common questions and tips for talking about donating a brain for research.
The Association for Frontotemporal Degeneration (AFTD) is an advocacy organization with a mission to improve the lives of people affected by FTD. Its website offers:
- An information page that outlines what to expect and how to participate in brain donation.
CurePSP is an advocacy organization working to improve awareness, education, and care for prime of life neurodegenerative diseases. It offers:
- A brochure (PDF) regarding the CurePSP Brain Tissue Donation Program that includes answers to common questions and an overview of the brain donation process.
The Brain Support Network is a nonprofit organization dedicated to the well-being of those with neurodegenerative disorders. Its website offers information on brain donation, including:
- An information page and brain donation brochure(PDF).
- An infographic about the brain donation process.
- A brain donation FAQ that talks about eligibility, selection of a brain bank, consent, costs, and other topics.
The FTD Disorders Registry has the following resources:
Alzforum is a news website and information resource to help researchers speed up discovery and advance developing treatments for Alzheimer’s disease and related disorders. Its website features:
- A list of brain banks that collect both diseased and normal brains for research.
The National Institutes of Health's NeuroBioBank was established in September 2013 as a national resource for scientists using human brain tissue and related biospecimens for research to better understand the nervous system. It is the point of access to six biorepositories.
** Any resources that the FTD Disorders Registry (FTDDR) provides are for informational purposes only. FTDDR is not responsible for and does not endorse the materials at the linked sites. Advice regarding your personal medical management should be obtained through consultation with a healthcare provider who is familiar with your medical history.