Just to add a note, I am truly sorry for what you and your husband have endured....This disease is awful and it medical science has made so little progress on it.
I agree, as Bob said, the Neuropathy Assn. or you can google neuropathy centers to see if any of them would be interested.
My doctor already told me, my brain would be of use to them, and as goulish of a thought that is to me, I am glad he let me know it would be helpful. Not all institutions want bodies for science. Some have too many.
I would say also, make sure that blood has been reserved for a full genetic study on your husband. If you have offspring, it would be a good idea. My worst fear is what I have is some genetic disease yet undiscovered....and has passed to yet my grandchildren.
Hugs to you in your trying time....this is a painful thing to go thru, and my heart goes out to you.

And thank you, for your offer to science, for those of us still suffering with this disease. I will PM you my academic center, and you can see if they are interested.