Your donation DOUBLED through April 30 thanks to anonymous donors who pledged to match your gift! DONATE NOW!
Your donation DOUBLED through April 30 thanks to anonymous donors who pledged to match your gift! DONATE NOW!
This program is only available in the US.
Donating tissue for medical research is an important and deeply personal decision. Many feel powerless when they are first diagnosed with Ataxia. Brain donation gives the donor and family the power to provide researchers with knowledge to fight back against the disease. The examination of diseased brain tissue by a trained researcher remains the gold standard for gaining a better understanding of the disease.
Brain research benefits all those who are diagnosed with Ataxia. This makes brain donation an ideal way to achieve a positive outcome despite a difficult situation. Brain donation can assist in finding treatments and a cure!
Many people who are interested in donating their brain for research aren’t sure where to start. It can be challenging to find information online. The first step in this process is connecting with a Brain Bank. A Brain Bank is a place where donated brain tissue is collected and stored to help advance neurological research.
Brain donors are strongly encouraged to pre-register with Brain Banks in advance of their passing. This will give the Brain Bank the time needed to complete legal paperwork and plan out the logistics of brain donation. It is difficult to make these plans after death has occurred. Without pre-registration, it is likely that donation will not be possible.
A list of Brain Banks that are currently accepting Ataxia brain donations is coming soon. Email research@ataxia.org if you have immediate questions or needs.
BRAIN BANK NAME
LOCATION
DONATION RESTRICTIONS
Ann Arbor, MI, USA |
Accepts donations from Michigan. Donors must have a clinical diagnosis of ataxia.
Belmont, MA, USA
Donors can not have any of the following conditions: Prion diseases, HIV, active Hep C, and significant strokes.
Baltimore, MD, USA
Donors can not have any of the following conditions: Prison Disease, HIV, Hep B, Hep C, stoke, traumatic brain injury.
Miami, FL, USA
Donors are accepted from all states except Hawaii, Alaska, North Dakota, and South Dakota. Donors can not have any bacterial or viral conditions.
Los Angeles, CA
USA
Restrictions are based on whether the donor was a preexisting patient. Some fees may apply.
Pittsburgh, PA, USA
Donors within 2 hours drive of the brain bank preferred.
Charleston, SC, USA
Accepts donations from South Carolina. Donors can not have any of the following conditions: Infectious diseases including bacterial or viral infections, traumatic brain injury.
San Antonio, TX, USA
Donations from Texas prioritized. Medical records required.
Sun City, AZ, USA
Accepts donations from the Maricopa Country, AZ area. Donors can not have any bacterial or viral conditions.
London, UK
Accepts donations only from within the United Kingdom.
Manchester, UK
Accepts donations from the north west of England.
London, UK
Accepts donations only from within the United Kingdom.
Newcastle, UK
Donors within 2 hours drive of the brain bank preferred. Donors can not have any bacterial or viral conditions.
Bristol, UK
Accepts donors from south west of England (excluding North Wales) and parts of the Midlands (UK).
Halifax, NS, Canada
Accepts donors from Canada. Donors can not have any bacterial or viral conditions.
Bonn, Dresden, Munich, Rostock, and Tübingen; Germany
Accepts donors from Germany.
Having trouble finding a Brain Bank? You can contact the Brain Donor Project for assistance with connecting with brain banks within the NeuroBioBank. The NeuroBioBank is a part of the National Institutes of Health, the primary agency responsible for biomedical and public health research in the United States.
Do you have a question that is not listed here? Please feel free to email research@ataxia.org for more information or see the Brain Donor Project Frequently Asked Questions webpage.
Is it necessary to register with a Brain Bank to be a donor?
Registration is not necessary, but it is strongly preferred. After someone dies, the process of brain donation is time sensitive. Pre-registration with a Brain Bank makes this process go more smoothly.
Additionally, anyone who is interested in donating their brain for research is strongly encouraged to talk with family and friends about it in advance. Well-informed family members are helpful during the brain donation process.
How long after death can brain tissue be donated?
Timely recovery is very important. Brain tissue retrieval must take place within 24 hours of the time of death. This is to ensure the preservation of tissue and maximize its utility for research. Thus, notifying your chosen Brain Bank within 6-12 hours of death is crucial. This will give the Brain Bank time to arrange for a pathologist to facilitate the tissue recovery.
Does the donor family incur any expense for brain donation?
It depends on the Brain Bank. For most Brain Banks, there is no financial cost to the family for the brain tissue donation. The donor family is responsible for regular funeral/mortuary or cremation expenses, or an official autopsy, if requested, to determine the cause of death.
However, some Brain Banks may require family members to pay for costs associated with tissue donation. Please check with the Brain Bank you are interested in.
Does brain donation interfere with funeral arrangements?
No. Donating your brain will not delay or interfere with any funerary plans. Most Brain Banks work together with the donor’s family and funeral home to coordinate the donation so that it does not impact other plans. Having an open casket is still possible following brain donation.
What happens to the donated tissue?
The tissue will be processed and stored in a scientific lab. Notification of the availability of tissue for research will be shared to approved researchers by the Brain Bank. Your gift may benefit dozens of different research studies. Your identity and your family’s identity will remain anonymous to the researchers.
Hearing about the thoughts and experiences of others might help you decide if enrolling in a brain donation program is the right choice for you. Below are comments from individuals with donation plans in place and family members whose loved ones were donors in the past.
Are you a biomedical researcher looking for postmortem ataxia brain tissue? Please contact research@ataxia.org for information and support to access brain and spinal cord tissue from Ataxia donors.
Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by Ataxia.
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