brain donation for research

[azgirl]

my plan was to donate brain and spinal cord for research. However, it seems the Az research facility, barrow neurological, is no longer taking donations directly.


does anyone else plan to donate, and if so, where? how?

 

[Nikki J]

Try Mayo. They had interest in my sister and me even though not patients but possibly because of the c9.

You go there? Usually the clinics have programs or connections if you ask did they not give you any options? . Often you have to be a patient that is the case with NIH and Hopkins and I think MGH

There are a couple of programs for vets

Thank you for thinking of doing this

 

[lgelb]

Larry's brain and other bits went to the National Disease Research Interchange, which supplies researchers across the US and is partially NIH-funded. They are still requesting PALS' donations.

If you sign on beforehand, your family just lets them know and a local pathologist does everything the same day so cremation or burial then proceeds normally.

Since we had hoped to donate locally as well, but that did not work out, I ended up signing on the day of, and perhaps it's a reflection of the need that they were able to work with that, but of course they would prefer more notice.

 

[diagnosed2016]

Northwestern takes blood/tissue donations for their research. Not sure about brains, but try there? Les Turner ALS lab directed by Dr Siddique

 

[Vincent]

I just signed the paperwork for brain and spinal tissue as well as eyes and they want my tongue too. Kind of a weird thing signing a Consent for Autopsy form. But hey it's the last part of an mri study I completed last year. I basicaly have to die during business hours for them to get the tissues in time. So the last thing i get in the end is a ROAD TRIP!!!!!
Vincent

 

[pittsburghgal]

My PALS has signed up for brain and spinal cord tissue at our local ALS clinic in Pittsburgh.

Does anyone know if PALS are able to be organ donors?

Sharon

 

[azgirl]

I contacted dr bowsers office directly, he is fairly well known ALS Researcher at Barrow Neurological in Phoenix. They do take brain and tissue and store for their research or cooperate with other research labs.

I feel good about getting this plan in place. It sure does take a lot of paperwork!

may these donations we give lead to a cure someday.

 

[Nikki J]

Dr Bowser is awesome. He is a friend of a friend of a friend and very kindly spoke at length with my sister after her diagnosis. He is doing great work on biomarkers. I am glad you got it straightened out.

I have read and heard researchers speak of the incredible value of the donations made to Mayo. They continue to learn much from the c9 group I am sure SALS donations are equally helpful.

The people I spoke with when researching this path were very grateful and respectful of what was being offered.

Thank you to all here who are planning or considering this

 

[lgelb]

Organ donation is only possible for a scenario such as stroke or brain injury, that is unlikely for PALS. But tissue/bone/cornea donation is possible depending on other conditions. If you donate your brain and other parts of interest to a research program, your local tissue bank may be interested in what remains.

 

[Vincent]

In Canada I can't even donate blood. We have a disease of unknown etiology. Researchers here seem to think this wouldn't apply to ALS as it isn't contagious, but out of an abundance of caution the answer is NO.
Vincent