Many people with ALS and their family members are deeply committed to helping move ALS research forward to find new therapies and a cure. Often, people with ALS are eager to do whatever they can to help others who are also living with the disease or will be diagnosed in the future. One way that people with ALS can choose to help is by donating brain and spinal tissue at the time of death to ALS research.
The principal nerves that are affected by ALS are in the spinal cord and brain – areas that are hard to study in a living individual. When a person with ALS donates his or her tissue to ALS research, these organs are removed and preserved for scientific study. This tremendous act of generosity becomes part of the individual’s legacy and often serves to comfort surviving family members who know that their loved one’s spirit of caring lives on even after death.
Organ donation is often a difficult subject to talk about and you may wish to discuss it with your physician, who can answer your questions and help you decide if organ donation for ALS research is something that you would like to do. Jen Scalia, NP and Sarah Luppino are also good resources for you and your family.
The ALS Association maintains a list of facilities accepting tissue donation, including Mass General.