10 Facts About Brain Donation with Autism BrainNet

At Autism BrainNet, we are committed to advancing research through the gift of postmortem brain donation to better understand the causes of autism and related neurodevelopmental disorders.

The brain is the primary organ involved in autism, and there is still much to learn about how the human brain functions.

Studies of the postmortem brain provide one of the most direct ways for researchers to gain insights into the brain changes associated with autism.

The decision to become a brain donor is a personal one, and we encourage you to learn about the donation process in advance and to discuss it with your loved ones. Long-term planning can help minimize the stress associated with decision-making at the time of death.

The following 10 facts about brain donation with Autism BrainNet provide an overview of the program and process to help you determine if postmortem brain donation is right for you and your family.

Fact #1: Brain donation is a voluntary process and is not included in organ donation registries. However, brain donors can also be organ and tissue donors. Autism BrainNet encourages organ donation to save lives whenever possible.

Fact #2: Postmortem brain donation can only be used for research purposes and not for transplantation. Brain donation with Autism BrainNet helps to advance research into the biological causes of autism and related neurodevelopmental disorders.

Fact #3: A single brain donation to Autism BrainNet can facilitate hundreds of research studies for decades. Knowledge from these studies will help identify new treatments that could improve the quality of life of individuals with autism and related neurodevelopmental disorders.

Fact #4: Autistic individuals of any age, with or without other related conditions, individuals with a genetic diagnosis that confers a risk for autism, and individuals up to the age of 50 without a diagnosis of autism or known serious neurologic or psychiatric condition can become brain donors with Autism BrainNet.

Fact #5: Brain donation with Autism BrainNet does not require advanced registration. If you are interested in becoming a brain donor in the future, it is important to let your family know so they can help carry out your wishes by calling Autism BrainNet at 877-333-0999 at the time of death. Autism BrainNet has a downloadable Intent to Donate form and Brain Donor Card you and your family can use for planning purposes.

Fact #6: There is no cost to families working with Autism BrainNet. Autism BrainNet takes care of the financial costs associated with the brain donation.

Fact #7: Brain donation does not interfere with autopsy or funeral plans, including having an open casket viewing. Autism BrainNet donors are treated with respect and with the greatest care.

Fact #8: Autism BrainNet staff is available 24/7 to coordinate the donation process and to provide support to families throughout the process. Donor families are treated with compassion and respect.

Fact #9: The research value of brain tissue is best preserved if a brain donation is received within 48 hours after death. If a family decides to donate to Autism BrainNet, they should call 877-333-0999 within 24 hours after death for immediate assistance.

Fact #10: Autism BrainNet welcomes postmortem brain donations from eligible individuals from all over the United States, and Canada. Autism BrainNet coordinates brain recovery and arranges for the donation to be carefully transported to one of Autism BrainNet nodes, where it is preserved and stored for future distribution to approved, qualified researchers worldwide.

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