Sunday, March 20, 2011

Alzheimer's Disease, Dystonia and Brain Donation

There are many things we can do to help raise awareness, raise funds, even help others with Alzheimer's Disease.  One of the most valuable, and thoughtful things any of us can do regardless if we suffer Alzheimer's Disease or are healthy, is to donate our brain after we die.  When it comes to neurological disease, our brains hold the key.

I wrote a passionate post about brain donation facts and links about a year ago I hope you will take a look at.  I knew about organ donation, but like many of the people who replied to the original post, I had no idea you could donate your brain.  I know how valuable my brain is to me now, but to think it had value after I died kind of got me all warm and tingly inside :)

Tissue banks have been set up with many Alzheimer's research programs throughout the US.  I'm sure if we're doing them here, there are banks in your country who need your donation too.  To find a list you might try searching "Alzheimer's tissue banks" and the name of your country.

The most important thing to be aware of if you're considering brain donation is to plan ahead.  The brain is very fragile when you're alive, but it's even more fragile after you've died.  Certain drugs or therapies may damage it.  It begins to break down very, very quickly post mortem, so everything needs to be in place before your demise.  The article above gives you the simple instructions.  Researchers need brains that are young and old, diseased and healthy.  Without all these different types of healthy and diseased brains, they have nothing for comparison.

If someone in your family wants to donate their brain too, it would be good to have a discussion early enough that you can decide together where you would like both of your brains to go.  Because many neurological diseases have a genetic component, having brains from multiple generations to study is sometimes extremely valuable to scientists.  This is something often overlooked by donors and their families however.

If you choose to donate your brain it will be autopsied as a free part of the process and your family will receive notification of anything that is found at that time.  This may be very valuable information for your children or other relatives.  Knowing they may carry a genetic (or other) preponderance for a particular disease gives them the opportunity to change their lifestyle in such a way to minimize the chance or the effects of that disease.  That said, if you don't want to know the results, that is always your option as well.

There is a long list of neurological disease foundations looking and hoping for brain donations.  There are also many mental illness foundations looking for brain donations, so be aware that you may have multiple choices where you would like your or your loved one's brain to go.

Frequent readers here are aware that I suffer several neurological diseases.  Some rare, some all too common.  Either way, this really hits home for me because for every one of the diseases I suffer, there are many, many others.  My brain can't go to them  all, but maybe I can make a little bit of a difference for a disease that is important to me personally.

I will be asking my family to donate their brains too.  They have already let us know they want to be cremated after death, so I'm hoping this might be a viable option for them.

What a gift for the future...

Alzheimer's tissue bank links
Alphabetical listing by state - names and locations only
Alphabetical listing - repositories/contact information

Multiple Sclerosis tissue bank links
National MS Society list
How to donate to an MS tissue bank

Dystonia tissue bank links
Dystonia brochure
(no public list available)

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