End-of-life tissue donations

Some people living with ALS choose to make an end-of-life tissue donation to clinical research. Such a donation is an impactful contribution that people living with ALS can make to ALS research.

The main types of tissue donations that people living with ALS may choose are brain and spinal cord donations. That’s because these parts of the body are most affected by ALS. Donating brain and spinal cord tissue supports ALS clinical research because it’s very difficult to study the brain and spinal cord in living people.

If you choose to make an end-of-life tissue donation, it’s a good idea to start planning as early as possible. First, you will need to find an organization that can accept your donation. Some federal government agencies, universities, and ALS research organizations offer programs for end-of-life tissue donations that can preserve donated tissues for future studies. It’s also important to make sure your loved ones, medical providers, and other people who are supporting you — like hospice team members or social workers, for example — know about your wishes for tissue donation, so everyone will be on the same page.

If you would like to learn more about end-of-life tissue donation, there are helpful resources at the end of this module. Check with your medical providers to find out what tissue donation options are available in your area.

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