After many of the world’s brain samples available for autism research were lost earlier this year, a new effort is underway to increase tissue donation from those with the disorder.
The Autism Science Foundation is embarking on a two-year campaign utilizing social media as well as radio, print and online advertising to increase donation awareness and highlight the critical role that brain tissue samples play in the quest to better understand and treat autism.
Currently, with just four to six brain donations occurring annually, there are simply not enough samples available to keep pace with science, researchers say. As a result, increasing the number of donations has been a priority in the federal government’s autism strategic plan since it was established in 2008.
Earlier this year that shortage became even more dire when a freezer malfunction at a Boston-area brain bank left one-third of the world’s largest collection of autism brain samples damaged and unusable.
Unlike past efforts to increase donations which focused primarily on the importance of samples to researchers, the new campaign will highlight the outcomes that can be achieved by that research.
“Families want to feel as if the tragic loss of their loved one can result in something positive for another person. In the case of medical research, donation of tissue can bring about improvement for literally thousands of people if it is used to find or validate new treatments,” said Alison Singer, president of the Autism Science Foundation, who will lead the new effort funded by a $600,000 grant from the Simons Foundation.
Singer’s group plans to partner with an advertising agency to target the autism community as well as the general population. In addition to the need for brain donations from those with autism, the campaign will also highlight the importance of donations from family members and those without any connection to the developmental disorder.
“In autism, we have been challenged by trying to understand a complex neurodevelopmental disorder without having enough brain tissue available for study,” said Thomas Insel, director of the National Institute of Mental Health. “In so many ways, our ability to deliver for families with autism depends on the success of this effort.”