i think a letter is a little tacky especially to someone newly diagnosed. It would be much more appropriate for your neurologist to provide the information at a time when it might seem less abrupt and coldly clinical. My limited experience ( mine and my sister’s) is they wait for you to ask in civilian clinics but are exceedingly grateful when you do this. Studying the brains and spinal cords of PALS has yielded important information that can’t be obtained any other way. My aunt donated. My sister planned to but hadn’t set it up and her sudden death meant it wasn’t followed up on by her next of kin. I hope to ( but no time soon). You can have an open casket service after if desired
My PALS is not a vet but he plans to donate brain and spinal cord at time of death and we have everything set up with the University of Pittsburgh. We feel that if any possible good can come from having ALS, then we are on board. These donations are extremely valuable for furthering research on ALS. He also wants to be a general organ donor but I doubt they would want to harvest organs from an ALS patient.
My PALS was a vet and was seen at the VA. We never received a letter from the VA Biorepository Brain Bank prior to me contacting them. I found them when looking for programs to donate a PALS brain too. Dave had ALS/FTD and I wanted to be able to help in the research in this area. I know Dave would have wanted it too. So I did all the paperwork, well ahead of time, with a power of attorney. I made sure our daughters agreed with the decision. The brain bank called periodically to ask questions about the progression of both the ALS and FTD. After Dave passed I called them after calling hospice and the funeral home. They took care of everything from there, dealing with the funeral home, etc. About six months later they called to tell me the pathologist's report was ready and asked if I wanted a copy. They didn't just send it.
I'm very surprised you received a letter from them out of the blue. I'm wondering if it was a mistake. I found them to be VERY sensitive to the situation and to my feelings. When they called they always made sure it was a good time to talk and were gentle in their approach.
I am very glad we did this. I wanted something good to come from our terrible journey and hope Dave's donation can help finding a cure.