Who Knew? Simons Foundation Helps Addresses the Great Brain Tissue Shortage

Organ donors need to listen up here. No matter what you’ve done so far, even if you have the little red heart on your driver’s license, even if you discussed with your family and loved ones that you wish to donate all of your organs upon your death, this does not include brain tissue.

One of the reasons for this is that such tissue is used for research, not transplantation, so the brain isn’t included on general donor registries. Instead, people who want to donate their brain upon their death have to register with a brain donation organization, such as Harvard’s Brain Bank, to ensure that their brain is removed within hours of their death.

Who knew? And this largely unknown process of brain tissue donation is one of the contributing factors to a serious shortage of brain tissue for research, which is particularly acute when it comes to autism research.

The Simons Foundation’s Autism Research Initiative (SFARI), Autism Speaks and the Autism Science Foundation are among some of the heaviest hitters in autism research. (Read more about SFARI). The three organizations joined forces this spring through the Autism BrainNet collaboration to launch a new website, It Takes Brains.

The site aims to bring increased awareness to the brain tissue shortage in autism research and to encourage donations. Both are sorely needed. According to It Takes Brains, only four to six autistic brain donations occur each year. Comparatively, annual brain donations from Alzheimer’s sufferers number in the tens of thousands.

Some big names in the medical research and education community have also come on board as inaugural members of Autism BrainNet and will serve as collection and storage sites. Participating institutions include Harvard University/Beth Israel Deaconess Medical Center, the Ichan School of Medicine at Mount Sinai, the UC Davis MIND Institute and the University of Texas Southwestern Medical School.

Autism Speaks Chief Science Officer Robert Ring said that Autism BrainNet “represents an unprecedented investment ensuring that researchers have access to the brain tissue they need to answer the big questions about autism.”

Bringing awareness to brain tissue donations is just one of the many hurdles faced in autism research. Another significant obstacle faced by researchers is convincing parents to donate their autistic child’s brain tissue upon their deaths. Valerine Hund shares her experience in the heart wrenching matter, saying,

Although we could not have anticipated losing our son to a seizure, for us, in that moment, we gave back and did something that felt right. So now, Grayson can be a pioneer in helping make this next quantum leap in research. Out of something bad, something good came about.