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Stanford University Brain Donation


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#1 gypsy92

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Posted 13 October 2007 - 09:51 AM

Do any of you know about the brain donation program at Stanford University? As you know, the part of the brain that is affected by narcolepsy in the central brain and can only be studied post-mortum. Stanford has a program to study narcoleptic brains. I have been considering this program and was wondering if anyone in the NN had information or has signed up for this program?

#2 Marinaki

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Posted 14 October 2007 - 12:16 PM

Did you also read the study that stated that all of Stanfords findings in their theories as to what causes Narcolepsy were unfounded and not 100% accurate?

#3 DozyDayDreamer

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Posted 14 October 2007 - 10:01 PM

I didn't hear that about Stanford's findings. My understanding is that Narcolepsy study was significantly undermined at Stanford and other sleep centers because of PETA stopping study on dogs with Narcolepsy. Now the only option available is to wait until we die. That seems quite outrageous to me.

Hypocretin was only discovered in '89 I believe. That's BRAND spanking new. As we learn more, new theories are tweaked. That's the scientific method.

My hope is that Narcolepsy can be cured in time for the next generation of PWN to have a normal (i.e. W/O Narcolepsy) life. I believe it is possible, but only if we help legitimate scientific study along as best we can.

#4 MaliEinen

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Posted 17 October 2007 - 02:06 PM

HI folks. I work at the Center for Narcolepsy at Stanford. I wanted to correct a couple posts with misinformation. I am not aware of what studies are referred to that have shown the Stanford research to have been proven untrue. I am aware of others research that has later been shown to not be true but there have not been big reversals of any findings from the Stanford group.

As for the reason that the dogs are largely not used as a research model any longer at Stanford is not due to PETA. 1.) the dogs are very expensive to keep and our budget/funding largely does not allow us to keep the colony of dogs. 2.) We have not used invasive procedures on the dogs, nor did we sacrifice the dogs to study their brains. When the dogs pass away due to natural causes the brains have been studied. 3.) Current animal models that are used for the study and understanding of narcolepsy at Stanford are zebra fish, rats and mice. These animals reproduce rapidly, are less expensive to keep and in the case of the zebra fish, because they are translucent, developmental study can be done while the animals are alive.

In history the dogs have been quite important in helping the public and researchers understand narcolepsy. The dogs can have narcoelpsy in two ways ..1.) sporadically like humans, where the cause of what triggers the the loss of hypocretin producing cells is still not understood and 2.) the dogs who have a "broken" receptor. Unlike humans these dogs have normal hypocretin but they have a genetic defect (that can be bred or passed on) where their receptors are not able to use the hypocretin. This second model is less useful in understanding human narcolepsy, as a genetic defect of the hypocretin receptor is not the cause of human narcolepsy.

I hope this helps clarify some things...

#5 MaliEinen

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Posted 17 October 2007 - 02:21 PM

Hypocretin's existence in the brain was discovered in 1999 (Dr. DeLeccea /Scripts)..but it's role or function was not understood until 2000 when two groups simultaneously discovered that the loss of this chemical was the cause of human narcolepsy. Researchers in TX were studying mice where they had "knocked out" this chemical and found that they created mice with narcolepsy/cataplexy. At Stanford it was found through both the gene sequencing of the dogs with inherited narcolepsy (not like humans) and the sporadic cases of narcolepsy in dogs and humans that they hypocretin chemical was missing.

#6 Marinaki

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Posted 19 October 2007 - 04:08 PM

thank you MaliEinan

#7 turkt

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Posted 12 February 2008 - 04:24 AM

go to the Stanford website and you can ask for the information on brain donation to be sent to you. I am thinking about it.

#8 xiola23

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Posted 24 May 2008 - 10:00 AM

I sent an email several months ago requesting to sign up. I got one response email saying that they were interested in finding out more information.
I sent them what I knew at the time and haven't heard back from them since.
I'm sure that in order to actually donate my brain, I would have to sign some paperwork atleast?!
I'm gonna have to re-email and see what the hold up is.
Thanks for this post, it reminded me I needed to follow up.

QUOTE (turkt @ Feb 12 2008, 05:24 AM) <{POST_SNAPBACK}>
go to the Stanford website and you can ask for the information on brain donation to be sent to you. I am thinking about it.


#9 Lovemyhusband

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Posted 28 May 2008 - 03:08 PM

I am very surprised you need to send another e-mail. Stanford was very quick to respond to my e-mail and once I gave them my husbands name and our address I had all the paper work needed. The total time was about 2 weeks and the effort was minimal.

MaliEinen, Thank you for the additional info and clarifying some misconceptions. I don't know why I didn't realize animals could have N as well, I guess I just never thought about it.

#10 Marcianna

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Posted 03 August 2008 - 11:19 PM

I have actually thought about doing this and changed my mind. Some one told me that sometimes if you are an organ donor paramedics, er docs and others wont try to revive you. I'm sure that is not always true, but it could happen. And it totally made me paranoid that having a brain donated to science might be the same kind of deal. Especially since we are a rare breed!

It's probably just nonsense, but once I get something in my head that scares me... It is pretty much stuck! unsure.gif

#11 Damian

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Posted 04 August 2008 - 02:33 AM

QUOTE (Marcianna @ Aug 4 2008, 05:19 AM) <{POST_SNAPBACK}>
I have actually thought about doing this and changed my mind. Some one told me that sometimes if you are an organ donor paramedics, er docs and others wont try to revive you. I'm sure that is not always true, but it could happen. And it totally made me paranoid that having a brain donated to science might be the same kind of deal. Especially since we are a rare breed!

It's probably just nonsense, but once I get something in my head that scares me... It is pretty much stuck! unsure.gif


Hi
It is not just the central brain but also around the front of the brain is the hyper receptor 2 which if not working(being by passed).