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Atsugi
Moderator emeritus
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- 12/2010
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You must consider the coordination. Most donations are done pretty quickly in a hospital while the body is still ventilated and blood is circulated by machine.
Instead, we registered at Mayo. Here's how that happened:
Within the hour of my PALS death at home, I called the Mayo and the funeral home. The funeral home picked up the body, coordinated with Mayo, who took the brain and brain stem. I'm not sure if any other donations could be made so late (hours) after death.
Instead, we registered at Mayo. Here's how that happened:
Within the hour of my PALS death at home, I called the Mayo and the funeral home. The funeral home picked up the body, coordinated with Mayo, who took the brain and brain stem. I'm not sure if any other donations could be made so late (hours) after death.
Barbie
Extremely helpful member
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mike, do you think you have to be a patient to do the donation? my husband would like to do that, but we are not patients there any more (or anywhere for that matter!)
do you have the contact info up there you could share with me? Jax Mayo, right?
do you have the contact info up there you could share with me? Jax Mayo, right?
- Joined
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- 00/0000
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NDRI will take what you have to offer the day of death, sending a pathologist to the funeral home/crematory, for ALS research, so long as you meet their medical criteria. You can register on line. At the same time, you can still contribute whatever your local tissue bank can use.
gooseberry
Extremely helpful member
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- 5/2014
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The va is running a study from boston. We were told if you are a vet the will do the harvesting , transport, etc. You have to call the va boston site doing the actual study. 1-866-460-1158 or 857-364-6748
nebrhahe53
Very helpful member
- Joined
- Jun 13, 2014
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- 1,017
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- PALS
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- 06/2014
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- Tx
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Mike what is the chance your daughters will actually get als? Would you be considered familial now? I wonder if we all don't have genetic mutations that we just don't know about yet.
Nikki J
Moderator
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- Mar 22, 2012
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- 16,459
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- PALS
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- 04/2014
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Neil since their mom had a genetic mutation their chances of getting the gene are 50 percent each. The chances of getting ALS if they have inherited the mutation are very high. Except this mutation ( c9 like mine) is being aggressively studied because it is the most common. I believe there will be a treatment and almost certainly a cure before they have to worry. Re your situation. A certain percentage of PALS who seem to be sporadic end up having c9. Some neuros are testing for this in SALS. I also think there may be a genetic vulnerability in some people that make them susceptible if other things happen. Alstdi is doing genome sequencing on a series of pals
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