The need for tissue donations

26 Jun

The recent loss of tissue from one of the tissue banks is a major setback to autism research. Tissue, brain tissue in particular, is an incredibly scarce resource. This loss only highlights the need for tissue and the need for individuals and families to plan ahead on the question of tissue donation.

The Simons Foundation has a discussion of this in: Guest blog: The case for brain donation was written by Autism Science Foundation’s Alison Singer.

She addresses the fact that no one wants to think about being in a position to be a tissue donor, but that advanced planning is critical:

Fortunately, my daughter with autism is alive, happy, energetic (sleepless, in fact) and vivacious. I can’t imagine her any other way. Donating her brain is not something I really want to think about, but as parents of children with autism, we have to. And we have to think about it now, in advance of the period of grief and confusion that follows the loss of a child or other family member.

She refers people to the Autism Tissue Program website. The ATP is run by Autism Speaks.

Autism organizations–Autism Speaks, Autism Science Foundation, Simons Foundation–are all working towards the goal of improving access to tissue samples for research.

ATP has information on donation and registration for donation.

Another place to register isThe Eunice Kennedy Shriver NICHD Brain Tissue Bank. You (either as an autistic or a non-autistic relative) can register there.

3 Responses to “The need for tissue donations”

  1. Roger Kulp June 27, 2012 at 02:36 #

    I am in the process of signing up for the Autism Speaks/ATP program.They make it a lot easier for a person on the spectrum to donate than NICHD does.I wish I had signed up earlier,so I could have donated my mother’s brain.

    I guess you all saw this

    I would not be at all surprised if we find this,or a similar episode in the future,is done by somebody with antivaccine beliefs,or strong ties to an antivax group,given how strongly they oppose genetic research.Or any research that does not implicate vaccines or heavy metals for that matter.

    Any autism organization that holds this view,regarding genetic research,,and we know who they are,is by default,siding with the antivaxers

  2. lilady June 27, 2012 at 07:19 #

    I’ve left a comment on Alison Singer’s blog, about my own experience with the tissue donations we made, when my son died eight years ago.

    I especially feel sadness for the families who made the decision to donate their loved one’s brains for autism research. What a terrible loss for them…and the autism community.

  3. Yo-Yo July 1, 2012 at 13:21 #

    “Any autism organization that holds this view,regarding genetic research,,and we know who they are,is by default,siding with the antivaxers”

    Ahhh, nothing like violent threats to any ‘heretics’ who don’t even have anything to do with anti-vaxxers. Nice faux terrible punctuation by the way.

    That abomination of a tissue program sends chills down my spine.

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