Parents as Partners in Research

An Extraordinary Story of Hope

Like many of you, my family is affected by autism.

I have three beautiful boys who have this devastating disorder. Despite our daily challenges, I continue to find hope for my children and others with autism spectrum disorders through biomedical research efforts taking place throughout the country and the world. In fact, my family has taken part in many studies focusing on autism.

My sons, Richard, (13), David (11) and Brian (9), have participated in several projects, from behavioral sciences to genetics, all designed to help us better understand autism, which continues to baffle the medical community.

Today, I want to talk to you about another important research program that you may have heard about. It's called the Autism Tissue Program, an initiative established by NAAR and co-funded by NAAR,

the Autism Coalition for Research and Education and the National Institutes of Health (NIH) in partnership with the M.I.N.D. Institute at the University of California at Davis. The program makes post-mortem brain tissue available to as many qualified scientists as possible who are focusing on autism.

My family has a special relationship with the Autism Tissue Program. We became a donor family on May 18, 2002, after the sudden and tragic death of my loving husband, Richard.

Richard, who was mildly affected by autism, was a tremendous father and husband. Ever the research advocates, we actually spoke about enrolling our family in the Autism Tissue Program just two days before he passed away. When the time came, I did not hesitate to contact the program because I knew my husband wanted to make a difference and do what ever he could to help our boys.

Looking back, I can tell you that the donation greatly helped me in my time of grief because I know Richard gave the ultimate gift to help our children and future generations of people, both young and old, with autism.

Organ and tissue donation programs play a critical role in research efforts that are focused on finding treatments and cures for many diseases and disorders. For autism, that program is the Autism Tissue Program.

To date, over 30 researchers are utilizing tissue from the Autism Tissue Program in numerous projects focused on solving the mysteries of autism. One promising study, funded by NAAR and supported by the Autism Tissue Program, is the "Autism Brain Atlas Project," an unprecedented collaboration between researchers in the U.S. and Germany that is creating the first-ever brain atlas for autism. This project will become an open resource for researchers and help us better understand brain abnormalities associated with autism. The project may also lead to a biological marker for autism, which could enable doctors to definitively diagnose the disorder earlier than ever.

As a donor family, we are so proud of the Autism Tissue Program and my family is enrolled today. None us ever know what is going to happen, but we can make a gift of hope by joining the Autism Tissue Program.

As most parents of children with autism know, adversity can either destroy you or make you stronger. What keeps me going is having a great cause.

On behalf of NAAR and the Autism Tissue Program, I'd like to thank all of the families that have already registered with the program. And for those families who have not yet enrolled, I hope you will consider joining me and my family by enrolling in this important and compassionate initiative.

To learn more about the Autism Tissue Program or to enroll, please contact Stacy Fass or call 1-877-333-0999.

Sincerely,

Lisa Matthews

Mother of Richard, David and Brian

P.S. - Without brain tissue, studies that could lead to the treatment and eventual cure of autism spectrum disorders cannot be done. As more and more researchers are focusing on autism, your support now is needed more than ever.