Old 06-14-2018, 03:42 AM #1 (permalink)
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Default Question about end game planning

Hi, this is probably the wrong place to post this, but I don't know where to put it and am comfortable in the vets threads.

I am working on estate planning, not because I am in my end game, but because everyone should, incase they are hit by a bus. I apologize that this is a sensitive topic and hope that it isn't an inappropriate question; please breeze by this one if an uncomfortable topic.

I am struggling with instructions for body disposition. The reason I'm posting the question in this forum is because one of you may understand my question and have an answer that I've been unable to find elsewhere. I've always been an organ donor, but because it is my perception that some neuro diseases are not well understood, I am no longer comfortable with that solution. Instead I would like to donate my body to science, and preferably to research that would work to understand or cure diseases like this. However I'm having a hard time finding such an organization. The two I've queried so far (UW and BioGifts) only donate for med student practice. That would be ok if the only option, but seems a waste if there is more that could be learned from available tissue. I'm wondering if anyone knows of an org that would take bodies for research, specifically or especially for neuro research?

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Old 06-14-2018, 06:16 AM #2 (permalink)
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Default Re: Question about end game planning

there is a VA program

https://www.research.va.gov/programs...biobanking.cfm

There are also civilian opportunities. The clinics know and are happy to share. Some require that you are a patient in their system. Others may not.

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Old 06-14-2018, 08:23 AM #3 (permalink)
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Default Re: Question about end game planning

thanks, nikki, for mentioning the va brain bank. the brain bank also shares specimen material to other research centers. they are very easy to work with. also, many hospital als centers, such as emory, appreciate als volunteer research donations.
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Old 06-14-2018, 03:06 PM #4 (permalink)
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Default Re: Question about end game planning

Yes!

We donated to NDRI. They send a pathologist to recover what's needed, at the funeral home or cremation facility, and then the family takes custody of what's left.

[Everything is sewn up nice, for those doing a burial.]

It's in the link but I'm adding that NDRI is the contractor for the National ALS Biorepository.

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Old 06-14-2018, 07:55 PM #5 (permalink)
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Default Re: Question about end game planning

My wife donated herself to the Mayo Clinic ALS research team in Jacksonville FL.

At the hour she died, I called both the Mayo donation hotline and the funeral home. The funeral home arrived very soon and coordinated with Mayo to do their thing. We had an open casket funeral a few days later. I never mentioned to my kids that mom's brain and spinal cord had been removed.
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Old 06-14-2018, 08:51 PM #6 (permalink)
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Default Re: Question about end game planning

I've signed up with the VA repository--quite straightforward and easy. They'll call every six months or so to check on your status. Sounds like you need to move quickly after death occurs to have the harvesting done promptly, but they take care of all the arrangements with the funeral home once you notify them.

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Old 06-14-2018, 08:55 PM #7 (permalink)
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Default Re: Question about end game planning

I was told it is within 24 hours for it to be usable. There should be a number your survivor can call 24/7
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Old 06-14-2018, 10:34 PM #8 (permalink)
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Default Re: Question about end game planning

Mike, now that your kids are adults, (right?) if you haven't mentioned it, they would probably like to hear that Krissy contributed to research.

Maybe a little off track, but we always think about the elderly or fatally ill needing a plan, but it's worth talking to your kids with driver's licenses, about whether they are listed as donors. A lot of kids were not schooled in the need but are happy to contribute once they understand how it works, and the world needs more organ and tissue donations, across all diseases, trauma, and burns.
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