It takes brains…to solve autism

11 Jul

A few years ago I was lucky enough to attend an IMFAR meeting. IMFAR is the largest autism science conference in the world. Two of the most important facts I took away from that were (1) brain tissue is a critical part of autism research and (2) there is a scarcity of brain tissue for autism research. OK, there’s a third point: they need tissue from autistics, relatives and people from outside the autism community.

No one wants to think about themselves or their loved ones dying. It’s hard think about tissue donation for one’s self and even harder for one’s loved one. Here’s my advice: think about it now. Make the decision now. Then, if you and your family are faced with the unthinkable, you or your loved ones won’t have to face that decision during a time of grief. The decision needs to be made quickly. For tissue to be useful to researchers, it needs to be prepared quickly.

When you register as a tissue donor for research you are not giving consent. You still have that right later. But you are committing yourself and informing yourself.

Autism BrainNet is a group of sites working together on tissue collection and distribution. It takes brains…to solve autism is an outreach program to inform people about the need for tissue donations and to register donors. The registration process is very fast. Take the time to plan now on what decision you want to make for yourself and your loved ones and if you agree with the importance of tissue donation, register. Don’t put it off.

Here is the description of It Takes Brains… from their website:

IT TAKES BRAINS is the outreach program of the Autism BrainNet, a new network of research institutions that will collaborate on groundbreaking brain research. Brain study is the key to solving autism, and our mission is to urge families to make the heroic decision to register for brain tissue donation.

Here is the longer description:

The It Takes Brains outreach program brings together a group of leading autism science research organizations: the Simons Foundation, the Autism Science Foundation, Autism Speaks, and the MIND Institute of the University of California at Davis.

Responding to the severe shortage of brain tissue that is holding back autism research, we have joined to make the public, and especially individuals and families affected by autism, aware of the critical need for donated brain tissue. The study of the postmortem brain tissue of both those who had autism and of those who were unaffected will have an enormous impact on the understanding and treatment of autism. We want to urge people with autism, families affected by autism, and unaffected people to register to donate brain tissue to autism research. Because brain tissue is so difficult to procure without advance planning, we are reaching out in order improve the future for countless individuals and families affected by autism.

In order to ensure the highest quality brain research and to streamline the donation process, the Simons Foundation and Autism Speaks have established the Autism BrainNet, a new network of research institutions that will enable the highest quality and most rigorous research into the causes of autism spectrum and other neurodevelopmental disorders. Studies undertaken with brain tissue acquired through the Autism BrainNet will generate data that will improve our understanding of autism and lead to the development of autism treatments. The mission of the Autism BrainNet, along with the It Takes Brains outreach initiative, is to create a partnership between the scientific community and individuals and families affected by autism to develop a sensitive, transparent, and effective strategy for acquiring and distributing the highest quality tissue for research worldwide.

The Autism BrainNet is currently comprised of:
The MIND Institute of the University of California at Davis, Sacramento
The Icahn School of Medicine at Mount Sinai, New York
The University of Texas Southwestern Medical School, Dallas
Harvard University/Beth Israel Deaconess Medical Center, Boston
Autism BrainNet plans to add sites across the U.S. and internationally for brain research, making the donation process as simple and compassionate as possible for donor families.

To solve autism, it will take the best brains in the scientific community, as well as the heroic actions of Superheroes- both people who have autism and those who are unaffected- who make the courageous, wise, and generous decision to donate brain tissue to this crucial mission. Our vision for what the Autism BrainNet can be is far more than a central management and collection site for brain tissue, but also a worldwide collaboration of research facilities whose unique resources and brilliant minds work together to advance autism research.


By Matt Carey

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4 Responses to “It takes brains…to solve autism”

  1. chavisory July 11, 2014 at 04:33 #

    I visited the “It Takes Brains” website a while back and was pretty severely troubled by the fact that usability of the website doesn’t seem to be aimed at and for…autistic people. A huge red flag–and perhaps this seems trivial to a non-autistic audience–was a musical auto-play feature. NO ONE designing a website for a primarily autistic audience would include such a thing.

    So until “It Takes Brains” gets this “autistic people are the owners of our own lives and bodies” thing, I’m pretty okay with them NOT having what they need to “solve autism.” Nope. No thank you.

    • Sullivan (Matt Carey) July 11, 2014 at 05:58 #

      The main point now is think about it and make plans.

      Consider another bank?

      Here’s a list:
      http://www.ninds.nih.gov/find_people/voluntary_orgs/vol_org_sub_BB.htm

      Here’s one that is worth considering
      http://medschool.umaryland.edu/BTBank/

      The NICHD Brain and Tissue Bank for Developmental Disorders is in contract to the Eunice Kennedy Shriver National Institute of Child Health and Human Development. We are located at the University of Maryland School of Medicine – Department of Pediatrics in Baltimore, Maryland.

      • chavisory July 12, 2014 at 16:39 #

        I mean, yeah, it’s something I’d consider if I had ANY confidence that research derived from brain banks was going to be used to improve understanding and support for autistic people rather than further stigma and pathologization.

        In the current climate, I just don’t.

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  1. It takes brains…to solve autism | Left Brain Right Brain | My Autism Site | All About Autism — My Autism Site | All About Autism - July 11, 2014

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