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Tissue Bank: Autism Research Offers Hope Posted By: shannonj
Posted On: 06/28/2008
Hi Foggyrock members-
Autism Research Institute asked me to write a personal testimony about tissue donation for their recent mailer. It is such an important issue that I thought I would share it with you too....Here it is:

No parent wants to ever consider that they will outlive their child. It goes against every parental instinct. Hence, from before our babies are even born, we take every possible precaution to insure health, safety and a long life. From prenatal vitamins to sonograms, from baby monitors to diaper cream, from seat belts and helmets to life jackets, we spare no costs in protecting our children. It is more than a duty. It is an undeniable responsibility that isn't to be taken lightly.

However, history teaches us that, no matter how careful and cautious we are, we can't always keep our children safe. Especially in a world where the rates of autism continue to rise...in every community, and even in our own homes. No car seat or crib bumper set prevented autism from knocking on my family's door. My son, Wynn, was diagnosed ten years ago, in spite of my best efforts otherwise. My heart broke in two that day, as any parent can imagine. Even today, all these years later, I still feel physical pain while I learn of another child being diagnosed with this same life-altering disability. I find myself incredulous that we are still in the dark as to the causes of autism and of knowledge of treatments that would offer freedom and relief to a population that deserves so much more.

That is why I've registered both of my children with the NICHD Brain and Tissue Bank for Developmental Disorders. It's excruciatingly painful to imagine a life without either one of them, but pondering a future without answers is beyond comprehension. Those few minutes of my time might just make all the difference. I encourage you to take a few precious minutes as well.......

Shannon Johnson
Co-Founder
Foggyrock.com

FROM Autism Research Institute:

Dear Autism Research Institute Friends,

The Autism Research Institute is working closely with scientists and clinicians throughout the country in an effort to find effective treatments for this devastating disorder. According to these experts, limited availability of tissue from children who suffer with autism is hampering research because without actual tissue it is difficult to determine the basic biological defects responsible for this disorder. In an effort to increase research, the ARI has entered into a partnership with the Brain and Tissue Bank for Developmental Disorders at the University of Maryland in contract to the National Institute of Child Health and Human Development (NICHD) to support tissue donations.

Anyone Can Be a Donor
Anyone, regardless of age is invited to register as a tissue donor. The tissue bank is just as much in need of control tissue as tissue from those with autism. Tissue must be recovered within 24 hours because after this time the tissue has lost most of its usefulness for research purposes. Therefore, advanced registration is especially important in that it enables the intricate process of tissue recovery to occur in a timely manner.

Even if a person is not registered in advance, tissue donation may still be possible by calling the toll free number above. The Brain and Tissue Bank will make every attempt within its means to ensure successful tissue recovery.

To register:
Call 1-800-847-1539 or 1-410-706-1755 (from outside the continental U.S.) to request a packet or discuss any questions or concerns relating to tissue donation.

Contact the NICHD Tissue Bank:
University of Maryland
Department of Pediatrics
655 West Baltimore St., 13-013 BRD
Baltimore, MD. 21201-1559
Toll free 800-847-1539
Ph. 410-706-1755
Fx. 410-706-0038
Tags:  tissue donation
       
Motherof4 wrote this reply on 06/28/2008
This is a great idea. I hope, really hope, that they get some answers from the Tissue Bank.

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