Even while facing the challenges of ALS, many people choose to support research in meaningful and selfless ways. For those who wish to understand how their impact can continue after their passing, brain banks and biorepositories offer one way to help advance future discoveries.
Because Amyotrophic Lateral Sclerosis (ALS) is a disease of the motor neurons in the brain and spinal cord, samples of brain tissue are extremely valuable for researchers trying to understand the disease. However, these samples cannot be taken from a living donor — they can only be collected after death. To provide brain and spinal cord tissue for research, several brain banks exist to collect and store posthumously donated brain tissue from people with ALS.
Housed at institutions like hospitals, government research centers, and universities, these brain banks provide researchers with samples essential to learning more about ALS. The tissue they collect is contributed by people living with ALS and other neurodegenerative diseases who have generously chosen to donate their tissue after death — ensuring a lasting legacy of impact in ALS research.
Brain Banks & Biorepositories for People with ALS in the U.S.
- VA ALS Biorepository Brain Bank
- National Posttraumatic Stress Disorder Brain Bank
- Target ALS — Postmortem Tissue Core
- This is a multicenter program across six ALS centers that collects postmortem brain and spinal cord tissue. targetals.org
- Georgetown Brain Bank (GBB)
- Part of Georgetown University/MedStar Health. Accepts donations from people with ALS. You can learn more at their website here.
- To inquire or request: Contact Marina Selenica at Georgetown University (ms4739@georgetown.edu)
- Harvard Brain Tissue Resource Center (HBTRC)
- A long-established brain bank; part of the NIH NeuroBioBank.
- Accepts brains from people with neurological disorders, including ALS.
- To register/learn more:
- Call 1-800-BRAIN BANK (1-800-272-4622)
- Or register online via their secure form.
- University of Miami – Brain Endowment Bank
- NIH NeuroBioBank
- A network of several brain/tissue repositories.
- They coordinate the distribution of donated tissue to researchers.
- If you are interested in donating you can learn more here: neurobiobank.nih.gov
Other ways to study motor neurons through living tissue
In addition to studying brain tissue, there are ways to investigate motor neuron biology using samples collected from people living with ALS.
While brain and spinal cord tissue can’t be extracted from a living person, motor neuron cells can be modeled in the lab using induced pluripotent stem cells (iPSCs) created from living tissue. iPSCs are stem cells that can be reprogrammed from various kinds of cells in the body, and then “differentiated,” or coaxed to turn into any other kind of cell. These models of ALS-affected motor neurons can help scientists learn more about the disease and test potential treatments.
Using cells from several sources – including blood samples generously shared by participants in the ALS Research Collaborative (ARC) Study – scientists at the ALS Therapy Development Institute (ALS TDI) have created cellular models of ALS caused by mutations in genes like SOD1, C9orf72, TDP43. We are also currently characterizing cell models of sporadic ALS, which will soon be made available to researchers globally through a partnership with Axol Biosciences.
Together, this work pushes us closer to developing effective treatments for everyone with ALS. We remain deeply grateful to all who contribute their data and strengthen ALS research for the entire community.
If you are living with ALS and are interested in contributing to ALS research now, you can learn more about the ARC Study here.
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