Brain and Tissue Banks

[Guest guest]

I found some info on Brain and Tissue Banks, not to sound morbid, but in

case anyone may be interested. Here are 3 banks here in the states, but I

don't know of any internationally, but would be interested in that info, if

anyone knows. The info in the attached emails, is coming from the

University of land Brain and Tissue Bank. You can contact them via the

web site and ask for a Tissue Transfer Agreement to sign beforehand, so

everything would be in place before death occurs.

University of Miami, Miami, FL: http://www.med.miami.edu/BTB

Children's Hospital of Orange County (CHOC), Orange, CA:

http://www.choc.com/btbmain.htm

University of land, Baltimore, MD:

http://som1.ab.umd.edu/BrainTissueBank/main.html

Savage

Mom to and Chelsea (both with MEB)

Re: RD:

Dear ,

There is no cost whatsoever to the family for any tissue recovery. The

Banks

absorb all costs directly related to the tissue recovery, such as paying the

pathologist who recovers the tissue .... Unlike " donating your body to

science " ,

where the family does not have to pay for funeral or cremation, when

donating

to

the Banks, funeral costs are still paid by the family. It is important to

note

that tissue donation does not interfere in any way with a traditional

funeral

and

viewing.

Time is a very important factor in the usefulness of tissue for research.

All

tissue must be safely harvested within a 24 hour period. But, I always feel

it

is important to stress that the family needs time to grieve and be with the

one

they have lost. No one should ever feel that that natural period of

grieving

will be taken away because tissues are going to be donated for research

purposes.

Because of the importance of the " post-mortem interval " , or hours between

death

and recovery, sometimes we do " air-lift " tissue from across the country. We

have

a wonderful courier service who arranges to get the tissue to us in a matter

of a

few hours by directly interacting with airlines.

As you can imagine, the bills for such tissue recoveries mount up fairly

rapidly. Since we feel very strongly about not turning to the families for

any

financial support, we instead turn to our researchers. We charge

researchers

a

small fee of $50 per tissue section when they receive tissues from us. Most

researchers estimate the number of tissues they will need and write this

amount

into their grants. All of our researchers are very supportive in this

regard,

understanding our policy of not burdening the family with extra costs at the

time

of such a loss.

In the case of your daughters, our Bank would be the sole Bank to receive

tissue. We have a strong emphasis on the importance of tissues other than

brain. Once we have recovered tissues, we than make the vital links with

others,

such as pathologists who specialize in eye disorders, or researchers with a

strong interest in muscle disorders. We would also immediately contact our

lissencephaly and hydrocephalus researchers. But in your case, , you

can

see why we have always had a broad scope of tissues to recover. Certainly

there

is a great interest in lissencephaly and hydrocephalus, but, as researchers

look

at these important brain malformations, it is just as important to address

changes in the eye. So many of the developmental disorders which we address

affect the entire body ... it's just impossible sometimes to only

concentrate

on

brain. And as we work on understanding so many of the brain disorders we

may

find out that some of these disorders have their origins elsewhere.

It is for reasons such as the above that you can see the importance of

having

a

centralized location for all tissues. Can you imagine researchers having to

call

four or five different Banks to find out where tissues were? Certainly,

this

scenerio has happened in the past. Maybe even worse, many many tissues are

not

even in " banks " but are instead kept safely with well-meaning pathologists

or

researchers who have no time or wherewithal to " advertise " that the tissue

is

available. Especially with the more rare disorders, where it is so

difficult to

gather tissues in numbers significant enough to support long-term research,

you

can imagine how research would be handicapped by such lack of

centralization.

, I can quite confidently say that one of the Brain and Tissue Banks

for

Developmental Disorders would be the best bank in the states for you to

consider

working with as you plan ahead and think about tissue donation. We have a

major

advantage because we have such a pediatric bent. As I said yesterday,

before

our

inception, the only major brain banks (which collect mostly brain only)

would

not

have been able to allot the time and finances for the disorders that your

daughters live with. Not because they are not concerned, but because their

resources go only so far as well. In our case, we have worked very hard,

and

are

working, to recruit the researchers who are interested in the childhood

disorders. Again, we have to pause and remember that before seven years ago

there would not have been an established brain and tissue bank prepared to

receive a donation and gather the forces of researchers whose field of

interest

would be your daughters' problems.

To address the issue of competition briefly, the answer is no. The other

two

major Banks, such as the Harvard Brain Bank and the National Neurological

Research Specimens Bank, do not work with the same disorders we do.

However,

we

all do communicate and help each other, referring cases and sharing

information

as often as possible. We do have a dear friend, Dr. Piotr Koslovski, who

runs an

AIDS Bank in New York, whose life's goal is to unite all tissue banks in a

national network. I think this may be a very real possibility in the

future.

Certainly, centralization and communication are very important issues in the

world of tissue banking.

There are brain banks in Europe, and some researchers have made an effort to

have

tissue sent over to the states. Our contact with them is fairly limited,

however. In the future, we will be helping Dr. Hugo Moser, at the Kennedy

Krieger Institute in Baltimore, with an international project designed to

consolidate tissue donations of children and adults affected with

Adrenoleukodystrophy from all around the world. This will be a new

experience

for us! I hope I don't have to learn Japanese!!

I hope this answers all of your very insightful questions.

A note to all: just call or email me individually for registration

materials!!

Sally

savage@... wrote:

> Sally,

>

> What is the cost to a family that wants to donate to the bank?

>

> I'm concernted because I have 2 children with an extremely rare brain

> disorder, eye disorder, and muscle disorder, and I understand to get a

brain

> in a timely manner to be of great use to the bank, might require an

air-lift

> to the bank?

>

> Also, if I donate the girls brains to a bank, will their brain and tissue

be

> routed to the bank....that the latest and greatest research is being done

in

> that area? In other words, would their brain go to one bank, and their

other

> organs go to another bank, etc?

>

> What bank would you say is the best bank in the states for the brain?

>

> Do brain banks exist internationally? If so, do you know where?

>

> Are the banks in competition with each other?

>

> How do the banks make their money to compensate for all the costs

involved?

>

> Savage

> Mom to and Chelsea,

> both with -Warburg Syndrome (Muscle-Eye-Brain Disease, chromosome 1

> p32-34), Lissencephaly (smooth brain), Hydrocephalus, abnormal eye

> development including microphthalmia and retinal detachment

(non-attachment),

> and congenital muscular dystrophy.

>

>

>

> ---------------------------------------------------

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