Autism Science Foundation to Develop Brain Tissue Awareness Campaign

3 Oct

One thing I learned at IMFAR last year was that brain tissue is critical to many areas of autism research and that there is very little tissue available for research. OK, that’s two things. This year saw an amazingly sad event where a large number of brain tissue samples were ruined in a freezer failure.

The ASF’s announcement is below and also on their website as Autism Science Foundation to Develop Brain Tissue Donation Awareness Campaign with Support from Simons Foundation

The Autism Science Foundation has received a two-year, $600,000 grant from the Simons Foundation to develop a multi-media campaign designed to increase awareness of the importance of brain tissue donation to further autism research.

“No effort is more important than raising awareness among families and scientists about the need for research on human brain tissue,” said Dr. Gerald Fischbach, Director of the Simons Foundation Autism Research Initiative.

Brain tissue research is critical for developing effective prevention and treatment options for autism but research in this area has lagged because of lack of tissue.

“In every area of medicine,” said Dr. Thomas Insel, Director of the National Institute of Mental Health, “new diagnostics and new treatments have come from studying the affected organ. In autism, we have been challenged by trying to understand a complex neurodevelopmental disorder without having enough brain tissue available for study. In so many ways, our ability to deliver for families with autism depends on the success of this effort.”

ASF President Alison Singer will serve as principal investigator on the project. Prior to founding the Autism Science Foundation, Singer served as Executive Vice President for Communications and Awareness at Autism Speaks, where she developed and co-produced the award-winning “The Odds” autism awareness campaign in conjunction with the Ad Council.

By Matt Carey

6 Responses to “Autism Science Foundation to Develop Brain Tissue Awareness Campaign”

  1. Andrew October 3, 2012 at 15:33 #

    I believe Autism Speaks lost that tissue. I don’t think their loss was that sad, at all. Although then again maybe I am just one of those guys who doesn’t want psychopaths to shove drugs in to me or kill my kin in the womb.

    • lilady October 4, 2012 at 00:10 #

      “I believe Autism Speaks lost that tissue. I don’t think their loss was that sad, at all. Although then again maybe I am just one of those guys who doesn’t want psychopaths to shove drugs in to me or kill my kin in the womb.”

      Obviously Andrew, you did not follow the links provided by Matt Carey. The tissues were “lost” at the Harvard Brain Bank…not by Autism Speaks….due to a freezer failure.

      The “loss” of the donated brain tissue was mourned by everyone in the science community and everyone who is involved in the genetic causes of autism.

      I don’t understand Andrew how you drew the (illogical) conclusion that brain tissue donations would result in killing your kin in the womb.

      I can assure you that my son who died peacefully in his sleep at age 28, eight years ago, really was dead, in spite of the heroic efforts of the EMTs and the resuscitation team in the emergency room at the hospital.

      My son was born with a rare genetic syndrome that profoundly impaired him physically, intellectually and medically as well. Our family and friends supported the foundation that funded, along with the NIH, research into the genetic causes of this syndrome and shortly before his death many of the de novo gene mutations that caused the syndrome were identified.

      Upon his death, hospital staff asked us to donate tissue for transplantation…we willingly agreed. The two people who received his corneas had their vision restored and others received his heart valves.

      Recipients of donor organs and tissues say they received the gift of life. We as his family, also received the gift of knowing that our son lives on in the lives of the people who received his corneas and heart valves.

      My first thoughts when I heard of the incident at the Harvard Brain Bank were of the families, who made the generous donations of their loved ones brains. I’m so sad for them and sad for the autism community.

  2. passionlessDrone October 3, 2012 at 23:08 #

    Hi Sullivan –

    Thank you for posting this. Very important topic that needs to be at the forefront of peoples thoughts. Very nicely done.

    – pD

  3. Science Mom October 4, 2012 at 01:34 #

    I agree pD and I hope that ASF can make a huge impact on brain tissue donations that are so desperately needed. It’s such a sensitive and painful topic for many so a tough directive.

  4. Roger Kulp October 4, 2012 at 20:50 #

    The Autism Speaks/Autism Tissue Program,is currently the easiest way for someone on the spectrum,or their family,to agree to donate brains or brain tissue.I have signed up with the program myself.Here is the page about the program

    And here is what they say about the freezer failure

    HBTRC has been and will continue to investigate how this happened. We have been advised that both of the back-up alarms to indicate a problem in the freezer system failed. This has never happened in their 35 year history. The HBTRC is funded by the National Institutes of Health (NIH) and has a very strong reputation. HBTRC is extremely distressed about this incident and is taking steps to ensure that it will not happen again. Autism Speaks is in the process of conducting its own independent assessment of the situation

    Andrew has been fed a line of garbage from certain elements of the neurodiversity movement,that oppose any and all intervention into the treatment of autism,because they think it would change who you are,or have the irrational view that any research into genetic causes of autism,would result in eugenic killings of autistics.This is simply fear of change,fed by ignorance,and lack of experience.I am willing to bet most people who believe like Andrew does,have no idea what it’s like,to have an acute infection,like meningitis,or pneumonia,and suffer a regression that takes years to recover from.

    Just as with the antivaccine movement,research will move ahead,and leave these people in the dust.

    I may not be as profoundly disabled as lilady’s son,but I have a fairly severe autism diagnosis.I have had multiple severe regressions,and have many serious medical issues.Some immune,some metabolic.I have struggled for decades with all sorts of sickness,and suffering,and never gotten any answers.Recently,I was one of the first outside of a published study,to be diagnosed with autoimmunity of the folate receptor,and related cerebral folate deficiency.I have the gene,I have the receptor.I was diagnosed through an experimental testing program at SUNY Downstate Medical Center.I had been treating this for almost a year before I was actually tested last month.

    For the first time in my life,I am high functioning,free of regressions,and free of most illness.I still have my GI disease,but I can live with that.

    If more people believed like Andrew did,or like the antivaxers do,research would never move forward,and I would be rotting away in an institution,sick and much lower functioning.


  1. Autism Science Foundation to Develop Brain Tissue Awareness Campaign - October 3, 2012

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