Alison Singer and David Amaral present at the IACC on AutismBrainNet

31 Dec

In July of 2014, David Amaral and Alison Singer presented to the IACC on a new initiative: AutismBrainNet. The idea is simple but difficult to discuss: we need people to consider planning on being tissue donors, specifically brain tissue donors. It’s the sort of decision one needs to come to in advance. Brain tissue can greatly help research efforts, but there is very little tissue available from autistics and their relatives.

Here is the presentation to the IACC:

From the AutismBrainNet website, here are instructions for procuring a brain donation. In other words, if one finds one’s self in the position of making a donation decision, here’s what to do–call the number given below.

Procedure for Procuring the Brain Donation
Process: The Autism BrainNet encourages families to tell medical personnel of their intention to donate upon the death of a family member. To help them, please call 1-877-333-0999 for instructions:
When you call, you will be connected with a staff member at the BrainNet site closest to you
The staff member at the site will act as a liaison between you and the family to coordinate the donation process
They will send you the protocols and a service agreement for reimbursement to sign prior to carrying out the procurement
The staff member will provide instructions on what to do with the brain following procurement and information on shipping
When the donation is complete, send an invoice for services to the BrainNet node directly (expect payment in 4 to 6 weeks); you will be provided with an address to send the invoice

Here is a longer presentation for the Simons Foundation (from this page).

By Matt Carey

4 Responses to “Alison Singer and David Amaral present at the IACC on AutismBrainNet”

  1. chavisory December 31, 2014 at 07:20 #

    On the day that I have the remotest amount of confidence that such research would be used to help and better understand autistic people, rather than try and make sure we stop existing.

    Until then, all the nope.

    • Sullivan (Matt Carey) December 31, 2014 at 17:47 #

      Well, it’s about as personal a decision as one could make.

  2. Jonathan January 2, 2015 at 00:33 #

    nice to see you write about something useful for a change from your typical stuff.

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