Many people living with ALS and their family members are deeply committed to helping ALS research move forward to learn more about the disease and to find new treatment therapies. One way that people with ALS can make a big impact on ALS research is by donating their brain and spinal tissue at the time of death.

The nerves affected by ALS are found in the tissue of the spinal cord and brain – areas that are hard to study in living beings. When a person with ALS donates their brain and spinal cord to ALS research, these organs are preserved for future scientific study. This tremendous act of generosity becomes part of the person’s legacy.

If you have considered donating your brain and spinal cord tissue, you should discuss it with your medical provider who can answer any questions you or your family members may have. If you decide to move forward with the donation process, the resources below can help guide you towards the appropriate pathway to give this gracious gift.

ALS Tissue Donation Program at Massachusetts General Hospital

The ALS Tissue Donation Program is made possible through the partnership of the Department of Neuropathology and our ALS research team. Our goal for this program is to make strides in better understanding the disease. Our MGH ALS Team will work with you and your family to ensure that the procurement process is efficient and respects your final arrangement wishes. Due to the limitation of tissue viability, we are able to accept donations from patients who are geographically close to the Boston Area (approximately 2-3 hours driving distance).

If you think you might be eligible, you can email or call Jen Scalia at jbscalia@partners.org or 617-726-0316 or Sarah Luppino at sluppino@partners.org or 617-724-3380 for more information.

If you live outside of the Boston Area, you should ask your clinic or health care provider for more information on how you can make this generous contribution to ALS research.

 Frequently Asked Questions

When do I have to start the process?
Many programs require you to pre-enroll to set up the logistics regarding the transportation of the donor’s tissue. For these programs, the designated family member must contact the program within a time frame of 24-48 hours from the time of passing to initiate the procurement process. There are a few programs that allow your next-of-kin to call immediately upon your passing in lieu of pre-registration. It is best to check each program’s enrollment process to ensure your valuable and gracious donation is received adequately.

 Will I have to pay for the procurement process?
This varies by program but for the most part, the programs will incur the costs for the procurement and transportation of the donated tissue. Our program presents no cost to you or your family.

Can I still make my own funeral arrangements? 
Yes, it is still possible to have a funeral in accordance with your wishes, including an open casket.

Type

Centers and Departments