(US) Brain donation - Brain Donor project

[Tom Kindlon]

https://twitter.com/i/web/status/872196993623502849

http://solvecfs.org/wp-content/uploads/2017/06/BrainDonation.pdf

 

[Lolo]

I'd gladly donate my brain and my body if it helps others. It seems that pwme can't donate organs. The universities here accept bodies but not very many and then there are conditions. Maybe I should contact Griffith as they are doing CFS research.

 

[Pyrrhus]

Solve ME has now set up their own Biobank for donor samples, as part of the You + ME Registry:
https://youandmeregistry.com/

At this point, they are only accepting blood samples, but they might accept organ donations in the future.

 

[TinaYesen]

http://solvecfs.org/wp-content/uploads/2017/06/BrainDonation.pdf

From the pdf file above, here's the organization's direct website: braindonorproject.org. When signing up you specify your neurological condition as ME/CFS.

I will be doing this. Knowing what breakthroughs have come from previous autopsies on pwME, I think it's tremendously important.

 

[Judee]

When signing up you specify your neurological condition as ME/CFS.

They say they confirm it with medical records. I wonder how they do that if doctors were never willing to put ME in the chart. I thought my environmental doctor had after 11 years of going to him but he never did.

 

[TinaYesen]

My brain is officially dedicated to science (for ME). I returned the paperwork to Univ of Maryland today.

It feels so good knowing I might be able to help everyone one day.

There were about 10-15 pages to read through, fill out, or sign. It took me two sessions, but manageable.

Again, knowing what incredible breakthroughs have come from previous autopsies on pwME, I hope others will join me! I truly believe this is one way for us to get one step closer to a cure.

 

[TiredBill]

How do people with ME/CFS answer the question:

Has the donor ever been diagnosed with a disorder affecting the brain?

That's a "yes," right? Sorry if that's a dumb question, but my brain is a little....

Donating my brain [hopefully a long time from now] is something I have thought about and wondered about for a long time.

I'm glad this thread was bumped as I was unaware of this opportunity.

Bill

 

[TinaYesen]

How do people with ME/CFS answer the question:

Has the donor ever been diagnosed with a disorder affecting the brain?

That's a "yes," right? Sorry if that's

I answered this as "Yes," as we know with ME other autopsies have shown viral remnants in the brain and other neurodegeneration markers (damage) in the brain. I hope it helps.

Also, I'm so happy you also decided to participate too (a long time from now). Same here.