Dr.
Salloway, one of our Scientific Advisory committee members, has established a CADASIL
tissue bank in collaboration with colleagues in the pathology department at Brown Hospital
in Rhode Island. Studies with CADASIL brain tissue are leading to advances in
understanding the molecular causes of small artery degeneration in CADASIL, which will
hopefully lead to new treatments in the future. This Bank is supported by brain and tissue
donation by surviving families of CADASIL patients.
For
more information please contact
Memory & Aging Program
Butler Hospital
345 Blackstone Blvd.
Providence, RI 02906
Phone: 401-455-6403
Fax: 401-455-6405
Below
is general information from the website at http://www.memorydisorder.org/braindonation.htm
For an information brochure concerning this important issue click on this link http://www.memorydisorder.org/pdf/brochures/braindonation.pdf
Why is brain donation important?
A
brain autopsy is the only way to confirm the cause of dementia. Researchers rely on
information from autopsies of donated brains to learn how CADASIL and other dementias
affect the brain. By understanding these diseases better, researchers hope to develop
better treatments and cures for them.
Who can donate?
Any
current or past patients or research participants at the Memory & Aging Program are
welcome to donate.
What should I consider when deciding to donate?
It is
important to discuss your wishes with your family members and to include them in your
decision-making process. You should also ask your doctor any questions you have when
deciding to enroll or after enrolling. It is always your decision whether or not to donate
your brain.
Is brain donation compatible with my religious beliefs?
This
is an important question to many potential donors and their families. Most religions allow
and even encourage donation of the brain and other organs for research, but you may wish
to discuss your decision or questions about brain donation with your religious leader. For
a list of statements from various religions on tissue donation, click here.
What do I do if I decide to enroll?
If
you choose to donate your brain, you must notify your doctor. You will fill out some forms
stating your wishes. Your family members will also receive information on whom to contact
at the time of your passing. It is important to make plans in advance because families
have other important concerns to deal with at the time of a loved one's passing.
Who can give permission?
Rhode
Island law
lets a person give consent for autopsy (including brain autopsy) while still alive and
also authorizes close relations to do so after death or if a person becomes incompetent.
What happens at the time of donation?
Your
family must notify us of your death shortly beforehand or within two hours after. Your
body will then be taken to Rhode Island Hospital and the brain will be removed. Afterwards
your body will be brought back to the funeral home.
Can I have an open casket funeral?
Absolutely.
The brain is removed in such a way that your face and hair will not be affected. Funeral
directors and morticians are familiar with the process and will know what to do to make
you look your best.
Will brain donation be helpful to my family?
Your
family will receive a written report on your autopsy. The report tells the diagnosis,
summarizes other findings, and includes a number to call if there are any questions.
Because Alzheimer's Disease and other forms of dementia sometimes run in families, your
surviving family members may find it helpful to know for sure whether you truly had the
disease. This knowledge allows them to seek help and make plans for the future.
Is there any cost?
The
autopsy is free, but certain transportation charges may apply.
Please click on the brochure at http://www.memorydisorder.org/pdf/brochures/braindonation.pdf
Revised: October 25, 2009
CADASIL Together We Have Hope Non Profit Organization
info@cadasilfoundation.org
All rights reserved.
Copyright © 2009
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