Ok I know no`one likes talking about death but i was wondering if anyone knows if there is away to donate cirtain organs to medical reserch after you die i have been thinking about this alot we all suffer from this terrably painful illness and i would like to donate my brain and any other parts of my body that may help doctors understand this illness and mabey stop the suffering of the next genaration is this possable is it worth it would anyone put the time and money in to reserch this. i just would like to think my suffering could have a good outcome and not just pain for no reason.

I know im only young and i hope i live for a long time but anything can happen at any time.

I'm not certain how it is done in the UK Brian...but in the US...you can let it be known that you wish to donate heart, corneas kidney, etc.  at the DMV when you get your drivers license.  They give you a card that you keep with your license and if you're in an accident the proper med. team knows your wishes.

Linda

Thanks Linda we dont have that here i think ima have to look in to it i feel very strongly about this i would hate to think my pain is good for nothing you know what i meen

Regards
Brian

Here is a link to a great discussion on the topic from last November.

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Unfortunately it turns out that there is no way to mark the brain as a "cluster" subject.  Your free to donate your brain but there is no way for researchers to pull cluster brains from the "bank"

-Dennis-

thanks denis first few pages where a interesting read got a bit sleepy after that will read rest tomorrow

I suspect the folks at the UK OUCH group could help you:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

thanks bob i wasnt awear of a uk ouch thx alot :)

I am with you brian if i could, and it would be used to help future ch afflictions i would gladly do it.

karl

Goadsby's setting up a "brain bank" (will be a year or so before it's set up).

I donated Chuckles brain for research so it'll probably be a while before they'll need another one... :)

Hugs BD

BarbaraD wrote on Aug 25^th, 2008 at 8:13am:

I donated Chuckles brain for research

Ummmm ... I hate to be the bearer of bad news, Barb, but for every MRI I have had, they always come back the same, when the doctors look at them:  "Nope, nothing there ... "

So, I guess that means I have no brain to donate ...

Chuck

Thanks BD that is good to know that someone like Goadsby is doing this.

Good for you Karl i am glad others feel the same way.

Regards
Brian

I hope we get a big link when Goadsby's gets that bank set up. What an opportunity to help those that come after us.

Guiseppi

Guiseppi wrote on Aug 25^th, 2008 at 10:29am:

I hope we get a big link when Goadsby's gets that bank set up. What an opportunity to help those that come after us. Guiseppi

Cant agree more my name will be on the donation list for his bank

BrianJ wrote on Aug 24^th, 2008 at 4:44pm:

i would like to donate my brain and any other parts of my body that may help doctors understand this illness and mabey stop the suffering of the next genaration is this possable is it worth it would anyone put the time and money in to reserch this.

I think it is possible.  This is not like other organ donation, where there's an uncertain list of recipients that changes all the time, and where the deceased would not personally know the recipient.

If you make a connection with a particular research team (like, at a university) that focuses on CH, and they agree to take on the responsibility, it might be possible to make them "executor" of your body.  Put it in your will, and set it up ahead of time.  If they are "on board" with your plan when you die, they should be able to get your body without a problem.  You have to specifically arrange it with them.

Thanks reese i will look in to it :)

I haven't read through that linked post yet, but I would think there is a way - at least in the US.  I am an Organ Doner, which is one thing - but not what is meant by this.  Organ Donation takes a healthy tissue or organ and implants it into someone in need of that tissue or organ.  But donation for science could possibly be set up through a Living Will.  Not sure if the UK has a system for Living Wills - or if this was discussed in that other thread.

In my Living Will, I initially crossed out the section designating that any part of my body would be used for science, but I have been seriously thinking about changing it and putting that I would donate my brain for study in relation to headaches.  ONLY for that purpose.  I don't know whether that would be good enough, or if they would need some of the extra cranial nerves as well (or at least branches of those nerves), but I haven't decided if I want to be cremated or not yet.  If I do chose to be cremated, then they can take whatever they want of my brain and nerves, as long as they cremate the rest of my body so my family can bury it.

I know this is a morbid thought, and I'm only 27, but I do think about things like this!  I completed my living will back in April or May, and it made me think about a lot of different things!  It is important to make these decisions now so that our loved ones don't have to when the time comes!  My parents have already told me their wishes, should something happen to them, and I have told them my wishes as well.  I will be updating my living will at some point in the future, and especially if my boyfriend and I get married, but for now, I think it is a good thing to have.  Just not sure if that is the best legal way to ensure that your particular organ donated to science is used in the way you wish.  Not sure they would have to honor it.  Some states in the US require notarization, whereas others don't.

Dunno - this might have been discussed in that other thread!

Take care,
Carrie :)