Hello everyone. My mom is in the final stages of HD. One of her requests was to have her body or brain or organs donated to HD research when she passed. The time is upon us now, much more quickly than we thought, and we dont know where to turn to find info on who to contact. SO, any help with this would be greatly appreciated!!

We filled out paper work with the center of excellence for brain donation! you might want to try there...sorry you have reached this time!

TXlady,

Call the Harvard Brain Bank right away at 1-800 BrainBank. Here's their website. [www.brainbank.mclean.org] They will take care of everything at no charge to the donor. Their donations go directly to HD research. My will has provisions for sending mine there when the time comes.

I'm sorry it has come to this, but she can do one final thing for the HD community.

Will

HI- I realize that this is not the best time to say this- but you and your family need to act fast. My mom actually passed away due to a massive brain bleed in October after catapulting into mid-end stage HD (the two had nothing to do with one another- separate events). Since it happened so fast, the hospital reported that they could not save any of her organs as she was on comfort measures only. I did ask in the days before she died (she was the longest surviving massive bleed victim they had ever seen -10 days. . . urinated until the day before she passed, and spoke coherently 5 days in and the day before she died) if there was any way we could save/harvest her organs- and the staff said they could not do this. I called the Harvard Brain Bank (a great big thanks to Will for the info ) who said they could not take her brain due to the bleed. Unfortunately, the Miami Brain Bank would have (despite the bleed) but she would have had to have registered first. We ended up only being able to donate her corneas and we were really disappointed. There may have been more I could have done, I don't know. But I applaud your family's (and your moms) wanting to do this- it is such a blessing for other families who are on transplant lists and so many die while waiting. Just for the record, inaddition to the Harvard Brain Bank, there is also Miami and LA Brain
Banks as well for those who may be located closer- and I believe that one can designate what they want their brain to be donated for. Will may know more about this. My sympathies and thoughts are with you all- it really is such a roller coaste of emotions. Take care. .

TxLady- I apologize. I just re-read your post and it looks like your mom wanted everything to go to HD research. Kindly disregard my comment on people on transplant wait lists. I meant no harm, I just hadn't read the whole post I guess. I knew people donated brains to HD and certainly bodies to medicine, but hadn't been acutely aware of other organs going to HD research. I am giving serious consideration to donating my brain also to one of the brain banks- Harvard/McLean would be my first choice but Miami staff (I have her email info ifanyone in that area would like it - especially since Miami takes stroke/bleed/trauma victims- and one can still designate for HD whereas Harvard told me they cannot accept those) said they take healthy brains for comparison (although my assumption is that all of them would) . Good luck with this endeavor- I wish you all the best.