The Autism BrainNet is a campaign to understand and treat a whole spectrum of pervasive developmental disorders, such as those caused by chromosome 15q duplications.
Many of us have signed the back of our driver’s license to give permission to donate our organs after we die. We have been made aware of the importance of doing this in order to help another person, and have taken action in advance so that something good can come from our death. We generally don’t think about this kind of opportunity in regard to our children affected by a chromosome 15q duplication. Now there is a program that provides families an opportunity to donate the brain and tissue of a loved one who has just died so that researchers can access a critical resource for understanding chromosome 15q duplications.
Registering to donate brain tissue does not mean that anyone anticipates your child will die an early death. It does mean, however, that you are prepared to act if such an unexpected and tragic event were to occur. It also includes you to receive quarterly newsletter that updates you and your family on autism discoveries where brain tissue has has a significant impact.
Brain tissue recovery is coordinated nationally by the Autism BrainNet, a network of 4 research sites across the United States. You can register at www.takesbrains.org/
In the event of a death, contact the 24-hour hotline number: 1-877-333-0999 for immediate assistance. You will be put in touch directly with the local site who will make the appropriate arrangements. You must initiate the call.
All inquiries are treated with absolute confidentiality.
Although many scientists have become aware of the importance of understanding what causes the symptoms of idic(15), a major roadblock to further understanding is the absence of brain tissue. Scientists are able to be creative and work with cells from blood and brain imaging, but access to studying the impact of idic(15) on the brains of affected individuals is vital.
-- Dr. Edwin Cook Jr, Dup15q Alliance Professional Advisor
The Autism Tissue Program has a world-wide network of researchers seeking to understand how and why the brains of affected individuals are different. The brain is the locus of the behaviors associated with chromosome 15q duplications (repetitive and restricted activities, lack of communication and social skills) and the seizures experienced by over half of affected individuals. Brain tissue is vital because it is the only way to see individual brain cells and read the DNA and genetic messages to get a better understanding of chromosome 15q duplications.
Brain tissue will be tremendously valuable for understanding the ways that duplication of chromosome 15 affects brain development and function, which will hopefully help us provide better treatment options for patients with dup15q syndrome. It is difficult to think about the potential death of a child. However, thinking about it in advance allows the family to discuss the issues surrounding a brain tissue donation without the incredible emotional stress that occurs when a child has died. Advance planning for a tissue donation is critical.
-- Dr. Carolyn Schanen, Dup15q Alliance Professional Advisor
Organ donation is a highly personal decision that has the power to accelerate research and transform the lives of countless families affected by chromosome 15q duplications. It reflects a family’s choice to benefit others, and honors the complex and challenging life of the affected child. You can make a tremendous difference in research into chromosome 15q duplications by participating in this program.
A pathologist performs the procedure and coordinates with the funeral director. Your child is treated with the utmost respect and dignity. The procedures used to obtain brain tissue will not affect any funeral arrangements, including viewing, that you wish to make. The Autism BrainNet assumes all costs related to obtaining tissue.