Autism
Tissue Program
The Gift of Hope
For
a Better Life For Our Children and Adults with Autism
We would like you to know about the Autism Tissue Program, that encourages
individuals and families to make precious brain tissue available to as many
qualified scientists as possible to advance autism research and solve the
mystery of this devastating disorder.
The Need
For Brain Tissue
Critical basic research is lagging behind because of a scarcity of brain tissue
for autism research. So far, researchers have documented irregularities in
several brain areas. The next step is a comprehensive, comparative investigation
of brain development with the new techniques now available. Without this tissue,
studies that could lead to the treatment, and the eventual cure, of autism
cannot be done.
With brain tissue, scientists can go far beyond the limits of other technologies
and study autism at a cellular and molecular level. It is possible to study
the pathways of the brain to help understand both normal and abnormal development.
What is learned about neurodevelopment can be applied to day-to-day educational
programs to make the most of developmental periods and the brain's capacity
to change (plasticity). What is learned about molecules and neurotransmitters
in the brain can lead to new treatments.
A Benefit
For Future Generations
Research takes time and patience. Parents of children with autism are often
skeptical of cures; but hopeful that it will be possible to enhance the ability
of their children to learn and participate more fully in society. We all hope
that autism research will benefit future generations.
Everyone
Can Help
You can help if you are a parent of a child or children with autism, are related
to someone with autism, or have an autism spectrum disorder yourself. We encourage
the registration of all family members as future brain tissue donors. Researchers
need brain tissue from people without autism as well as from people with autism
for scientific comparison. So, if you know someone with autism and want to
help, please understand that your brain tissue donation is also vitally important.
Making Your
Wishes Known
We know that the decision even to consider becoming a donor or arranging for
the donation of your child's brain tissue upon death can raise profound questions
of life and death, body and spirit. We urge you to talk with your family,
clergy and physician. Your family must be aware of your decision. Any medical
treatments your physician directs will be unaffected by your decision to donate
brain tissue.
An Expression
of Compassion
Virtually every religion encourages us to have compassion and to act to help
others. Tissue donation may be, for you, one of the ways to help future generations.
Registering to donate brain tissue does not mean that we anticipate you or
your child to die an early death. It does mean, however, that you are prepared
to act if such an unexpected and unfortunate event were to occur.
Brain Tissue
Recovery
A pathologist or neuropathologist performs tissue recovery in coordination
with the funeral arrangements. Your loved one is treated with the same respect
and dignity that would be given any patient and the procedures used to obtain
brain tissue will not affect any funeral arrangements, including viewing,
that you wish to make. The Autism Tissue Program assumes all
costs related to obtaining tissue.
A
National Network
Brain tissue recovery is coordinated nationally by the Autism Tissue Program
through the four NIH
(National Institutes of Health) brain banks: the Harvard Brain Tissue Resource
Center; and the Brain and Tissue Banks of Developmental Disorders at the University
of Maryland, the University of Miami, in Florida, and the Children's Hospital
of Orange County, in California.
In An Emergency
In the event of a death, contact us a the 24-hour hotline number:
1-877-333-0999
for immediate assistance. You will be put in touch directly with a brain bank
representative who will contact a local pathologist to assist with tissue
recovery at your area hospital.
· If you are registered as an organ donor, you or your next-of-kin
will still have to call this number to initiate post-mortem brain tissue donation.
· If you haven't pre-registered, donation can still be arranged with
this phone call.
Please Ask
Questions
The Autism Tissue Program outreach coordinator can answer questions you might
have about donation. All inquiries are treated with absolute confidentiality.
We have more information available about the Program. Just call toll-free:
1-877-333-0999.
To Register
Now
Complete information and secure online registration is available at MemoriesofHope.org
The Autism Tissue
Program is co-sponsored by the:
· National Alliance For Autism Research (NAAR)
· Autism Society of America (ASA)
Foundation
· UC Davis MIND
(Medical Investigation of Neurodevelopmental Disorders) Institute
With the National Institutes of:
· Child Health and Human Development (NICHD)
· Mental Health (NIMH),
· Neurological Disorders and Stroke (NINDS)