Please consider making arrangements now to donate your
brain tissue for research. Studying this tissue is
the best way scientists can discover the underlying
cause of this and other similar disorders and devise a
treatment to help those who come after us.
Below are two brain tissue donation programs that
specifically research MSA/Shy-Drager.
Other brain banks throughout the world are listed in
this directory.
http://www.brainbanks.org/brain_ba.htm
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Letter from Dr. Benarroch at Mayo Clinic:
Dear Sir/Madam:
The cause of the disease that is afflicting you,
called multiple system atrophy or Shy-Drager syndrome,
is not known. In other similar disorders, such as
Parkinson's disease, important advances are being
made in the understanding of the mechanisms that
trigger the loss of nerve cells, and these will
hopefully lead to treatments that may stop or at least
delay the progression of the disease.
One important clue about the cause and mechanisms of
this group of diseases is provided by the postmortem
examination of the brains of patients who die from
these disorders. Over the past four years, we have
been pursuing these studies, funded by the National
Institutes of Health (NIH). We have made some
advances, but there are still many questions that
remain to be answered. We would appreciate your
considering donating your brain for our study at the
time of death.
Your contribution will help many other patients
suffering from this still incurable disease. If you
consent with the brain donation, please contact me or
one of my co-workers at the Mayo Clinic, Rochester,
Minnesota. The address is:
Eduardo E. Benarroch, M.D., D.Sci.
Neurophysiology Laboratory
Mayo Clinic
807 Guggenheim Building
200 First Street SW
Rochester, MN 55905
Phone: 507-284-8863 or 507-284-3375
Fax: 507-284-3133
E-mail: benarroch.eduardo@m...
Many thanks in advance on behalf of many other
patients with Shy-Drager syndrome.
Sincerely,
Eduardo E. Benarroch, M.D., D.Sci.
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http://www.mc.vanderbilt.edu/gcrc/adc/brain.html
Vanderbilt Brain and Spinal Cord Donation Program
Many patients express an interest in making a
contribution to medical science to further research in
the cause of neurodegenerative disorders. In
Shy-Drager syndrome, also known as MSA, scientific
study of human brain obtained after death holds the
greatest hope for further understanding and ultimately
development of therapies to treat the disease. The
post-mortem examination, or autopsy, also provides
important, precise medical information to the family
of the deceased.
Information for Patients
You may wish to sign a notice of intent to make your
desire for organ donation official. This notice of
intent is not binding, but conveys your wish and
request in writing to your family members that you
wish to participate in the brain and spinal donation
program.
Information for Next of Kin
Your affected family member may wish to donate brain
tissue for special studies and research purposes. You
can concur with that decision by signing a separate
consent for the donation which is often attached to
his/her medical record. Upon death of your loved one,
you will need to sign an autopsy permit which gives
legal consent for a medical doctor to examine the body
and in particular, collect brain tissue.
We know that this will be a very difficult time for
you and we acknowledge the generous gift and
courageous act that tissue donation is for the benefit
of others. You should know that tissue removal can be
done in a way that an open-casket service can be
conducted.
For More Information
Please contact:
Ms. Velma Watkins
Autonomic Dysfunction Center
Vanderbilt University Medical Center
AA-3228 Medical Center North
Nashville, TN 37232-2195
Phone: (615) 343-0124
Fax: (615) 343-8649
E-Mail:
velma.watkins@m...