Demand is Increasing Worldwide for Autism BrainNet Postmortem Brain Tissue Resources

Autism BrainNet Advances Critical Autism Research Through the Gift of Brain Donation and Celebrates its 10th Anniversary in 2024

New York, NY (October 8, 2024) – A program of the Simons Foundation since 2014, Autism BrainNet today reported that over the past two-year period, the organization has seen a significant increase in brain donations to support autism research compared to the previous three-year period. This is important because the gift of one brain can support hundreds of research studies around the world that will improve the understanding of autism and related neurodevelopmental disorders. Under the program’s rigorous tissue processing and preservation protocol, the donated tissue remains viable as a resource in their state-of-the-art facilities for decades.

“Autism BrainNet actively connects the autism community to scientists at hospitals, universities, or other research institutions worldwide who are eager to accelerate research efforts and advance our understanding of autism by studying the human brain at the cellular, molecular or neural systems level. This kind of research cannot be replicated by computer models or other technologies, like magnetic resonance imaging (MRI), because none are able to examine the brain at a cellular and molecular level,” explained David G. Amaral, Ph.D., Scientific Director of Autism BrainNet and UC Davis Distinguished Professor at the UC Davis MIND Institute and Department of Psychiatry and Behavioral Sciences. “We’ve worked hard to educate the autism community and beyond about our program because every autistic individual or family who generously donates to our brain bank directly contributes to what we learn about autism and related disorders.”

In both 2022 and 2023, Autism BrainNet received 50 donations compared to an average of 36 donations annually from 2018-2021, a 39 percent increase. Over the past three years, Autism BrainNet approved 46 research studies using postmortem brain tissue and nearly 10 other projects are under review by the program’s Scientific Review Committee. In addition, Autism BrainNet supported research has generated 26 peer-reviewed articles that have shed light on the underlying causes and/or mechanisms of action of autism and related disorders at the cellular and/or molecular level.

Kelsey C. Martin, M.D., Ph.D., Executive Vice President, Autism and Neuroscience, SFARI (Simons Foundation Autism Research Initiative) added, “Researchers from around the world can request access to Autism BrainNet via SFARI BASE. Autism BrainNet makes available postmortem brain tissue as well as a wealth of associated medical, neuropsychological, neuropathological, and genetic data.”

Autism BrainNet Works with Providers and Families to Explain Brain Donation

Autism BrainNet works closely with professional partners, family advocacy groups, and partners in the autism community to raise awareness of the now ten-year old program and to support families and individuals throughout the donation process.

There is wide consensus that autism spectrum disorder (ASD or autism) and related neurodevelopmental disorders are neurological conditions. Beyond the diagnostic features of autism, individuals often have epilepsy, anxiety, intellectual disability and sleep disorders – all presumably due to alterations of brain function. Research using postmortem brain tissue provides one of the most direct paths to understanding the biological causes of autism and disseminated findings may enable families and autistic individuals to better advocate for their needs and interests.

Autism BrainNet accepts postmortem brain donations from people with a diagnosis of autism, even when other diagnoses are present, from people with a genetic diagnosis associated with autism, with or without a diagnosis of autism, and from neurotypical people. The program maintains a 24/7 telephone helpline (1-877-333-0999) to answer families’ questions and/or arrange for a brain donation. After Autism BrainNet gets permission for a donation, the clinical team coordinates the donation and ensures that it is safely transported, preserved, and stored for future use. Brain donation is not part of organ donation registries, which is why advance planning is important for families considering postmortem brain donation for research. There is no obligation or cost to families at any time.

“When my cousin Gregory Blackstock was born in the 1940s, there weren’t very many resources or even terminology that described his autistic experience,” said Dorothy Frisch, Lacey, WA, who donated artist Gregory Blackstock’s brain to Autism BrainNet in her role as his executor. “I appreciate that Greg’s legacy will grow through enjoyment of his art and in the gift of his brain. By supporting research, I hope that future autistic individuals benefit from all that researchers and healthcare providers learn about the causes and experience of autism.”

“In the 10 years since the launch of Autism BrainNet, we have been learning more about autism and related neurodevelopmental disorders through research on the postmortem tissue. We are humbled and deeply grateful for the gift of every brain donation. We look forward to continuing our work with the autism and related neurodevelopmental disorders communities to expand understanding of these complex neurological conditions.” said Marta Benedetti, Dr. Biol. Sciences, Director, Autism BrainNet, Senior Scientist, SFARI.

About Autism BrainNet

A program of the Simons Foundation, Autism BrainNet facilitates the collection, processing, storage and distribution of postmortem brain donations to advance autism and related neurodevelopmental disorders research worldwide. To learn more about brain donation and Autism BrainNet, please visit our website at AutismBrainNet.org or call 1-877-333-0999.