Wednesday, June 3, 2009

Hope, Healing, and Heroism Through Science

by Susan Semeleer, Associate Director of Communications, FasterCures
There is some exceptionally innovative work in biobanking. BioBank Central, a web portal that provides information and resources to the biobanking community recently launched its "Spotlight on Innovation series" to highlight the individuals and organizations involved in some of biobanking's best practices. We recently trained our spotlight on Autism Speaks and two of their research programs, the Autism Tissue Program (ATP), a post-mortem brain tissue bank for autism research, and the Autism Genetic Resource Exchange (AGRE).

This month's Spotlight is the first in a two-part series on the Autism Speaks banks and focuses on the ATP. Through a dedicated and innovative public education campaign, patient advocacy groups like Autism Speaks have made tremendous strides toward dispelling the stigma and misinformation that surrounds autism. With the ATP, they are taking that education campaign one critical step forward: providing researchers with precious tissue that could hold the key to unlocking the mysteries of the autistic brain.

To learn about the ATP from both a clinical and personal perspective, we interviewed Autism Speaks' Vice President of Clinical Programs, Dr. Clara Lajonchere; the ATP Director Dr. Daniel Lightfoot; and the family of Reid Thompson, an 11-year old tissue donor. Dr. Lajonchere and Dr. Lightfoot told us that tissue samples – particularly pediatric tissue samples – are absolutely critical for gaining better understanding of autism and are necessary for the kinds of molecular, genetic, and biochemical research needed to keep the pace of discovery moving.

The ATP wouldn’t be possible without the generosity of families like Reid Thompson's. The day after Reid passed away unexpectedly in his sleep, his parents and step-parents learned about the ATP tissue donation program. At a time when many among us would be immobilized by loss, Reid's family didn't hesitate; Reid's tissue was collected for the ATP bank and is now being used in studies that will help doctors learn more about the brain's development in autism. Reid's family told us that he was a teacher during his life, and that they take great comfort in knowing the ATP enables him to continue teaching.

What Dr. Lightfoot and his colleagues are doing, and what Reid Thompson and donors like him have done, is nothing short of heroic. What we found most impressive about them is that they didn’t seem to see the heroism in their actions. But we here at Biobank Central do, and we’ve no doubt you will as well. Please stop by ATP Spotlight, and visit the Autism Speaks and Autism Tissue Program Web sites to learn more about their innovative programs.

Stay tuned--BioBank Central's Spotlight will focus on the Autism Genetic Resource Exchange.

1 comment:

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