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Brain Donations Urged For Autism Research


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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.”

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Comments (7 Responses)

  1. KA101 says:

    One could also bring about improvement for thousands of spectrumites* by simply providing the accommodations we need. Actually hiring us would also be an excellent start–that 80% of autistic adults not having full-time work is pretty bloody bleak.

    *Whether we are “people” and therefore contemplated in this Singer person’s statement is another story. People don’t get threatened with forced sterilization, involuntary drugging, and abusive “therapy” that tends to correlate with PTSD.

    Given that the previous set of brains was aut$peaks-controlled, I feel no need to give of myself to support our opposition. Deal with it.

  2. Tacitus says:

    The brains can wait. We need equal opportunity. We need the laws protecting our rights to be enforced.

  3. autismUXB says:

    I just looked at the “Autism Science Foundation” website and found this –
    “While there are still a handful of parents who, in almost a religious way, cling to the notion that vaccines cause autism, the vast majority of parents and scientists have accepted what the data clearly show. There is no data to support an autism vaccine link. There never has been. Vaccines don’t cause autism.”
    These are the last people who should be given funding for research. Many parents have experienced their child receiving a horrible reaction to a vaccination which immediately resulted in pain, uncharacteristic screaming and passing out, then awaking next day with severe developmental regression (First hand observations are not “almost religious”) . The medical establishment says it is only a coincidence. Their only justification is an epidemiological study of statistics that they collected and no actual biological studies of the effect of toxins on a developing infant. Meanwhile, it’s basic science – mercury is a poison for the neurological system.

    In one sense they have completely deniability – “There is no data to support an autism vaccine link”, but only because no effort has been made to actually investigate the connection

  4. Therese says:

    I would never participated in ANYTHING run by the NIH. They are biased and hide the truth. They are government at its most corrupt. They protect drug manufacturers at the expense of our children. I have been researching a brain tissue bank through Autism Speaks but haven’t deceided anything yet. It just so much to think about.

  5. Gareth Nelson says:

    I hope the shortage remains an issue – considering the people who run the project and their goals, it’s actually a very good thing they have insufficient access to autistic brains – having such access would make it far easier to come up with targets for “intervention” in living autistics.

  6. Tacitus says:

    @AutismUXB Yes it is “almost religious.” You are completely ignoring all the millions of children who DO NOT HAVE that experience. You are free to ignore all the data points you want to, but please don’t claim that your position is superior to that of scientists who have actually done the intellectual footwork required.

  7. autismUXB says:

    My position is superior to these “scientists”, as are the other parents who witnessed the same horrible reaction their child received. Read the evidence they have – there is nothing about the actual biological effect of heavy metals on a developing infant’s system. All they rely on is statistics from selected medical records and none of it is biological. Also ask yourself how autism is doubling every decade and the experts claim they have no idea why.

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