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Saturday, October 15, 2005

Love drives founder of national autism group

By ANDY COLE
Morning News online

Anyone who has ever doubted the power of a mother's love never met Jo Pike. Six years ago, Pike was a stay-at-home mom caring for her four children. Then her son, Hunter, who was 2, was diagnosed with autism.

Today, she's the executive director of the largest organization in the country devoted to understanding, treating and finding a cure for autism.

"At first, we were like any parent," Pike said of the day she and her husband, Greg, found out about Hunter's condition.

"We were in denial," she said. "We went on the Internet to find out more about it, and we'd look at the symptoms and say, 'He doesn't do that,' or, 'He doesn't do this.' We were denying the diagnosis."

Autism is a bio-neurological developmental disability that generally appears before age 3. It impacts the normal development of the brain in the areas of social interaction, communication skills and cognitive function. Those with autism typically have difficulties in verbal and nonverbal communication, social interactions, and leisure or play activities.

The Pikes slowly came to the realization that their son, who was perfectly healthy just months earlier, was indeed autistic. Jo Pike began finding out everything she could about autism, the possible causes and treatments, and along the way she met many mothers of autistic children.

What she found in her research was plenty of misinformation and myths, so she created a Web site devoted to helping other moms.

"Momsonamission.com was a tool for all of us, the moms of autistic children, to stay in touch with each other, and to provide good information," Pike said.

The Web site grew, and eventually she started the National Autism Association. Pike since has had her hand in everything from creating legislation to publicizing the growing problem of autism. The Centers for Disease Control and Prevention estimates that autism affects one in every 166 children in the United States. Despite the huge numbers of children affected, little state and federal aid is devoted to research. Part of the problem is that little is known about what causes autism.

Another problem is public perception. For many people, their only exposure to autism has been through Dustin Hoffman's character in the film "Rain Man." But most cases aren't like that, Pike said. Fighting that perception is part of NAA's mission. She said most people know someone with autism and don't even know it.

"I travel a lot, and I can't go anywhere without meeting someone who has a son or daughter or grandchild with autism," Pike said.

Fundraising for a national organization is something Pike has had to learn about since forming NAA, which is designated as a 501c nonprofit. To learn about running such an organization, she's enrolled at the Non-Profit Institute at Francis Marion University. The program helps nonprofit leaders run their organizations more efficiently and teaches them how to solve many of the problems they face.

One of the organization's biggest fundraising efforts has been through an online store. Next week, Pike will open a small store in Marion called Little Shop of Hope, which is a tool for fundraising and awareness-boosting.

The store, such as the NAA, grew out of Pike's initial education about her son's condition. She began selling T-shirts, education materials and other items online. The new store, at 614 N. Main St., will not only be a retail site but also a hub for shipments of online purchases.

The Little Shop of Hope is just one of the many ventures Pike is busy organizing. She's also been coordinating the National Autism Conference in Myrtle Beach next month. The conference will feature internationally recognized researchers in the field of autism and will concentrate on providing as much information as possible to parents of autistic children.

One of the featured speakers at the conference will be David Kirby, a New York Times best-selling author who wrote the book, "Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy." Kirby's book looks at one of the most controversial topics in autism research: the presence of thimerosal, a mercury-based preservative, in vaccines. Many reports have linked thimerosal with autism.

To register for the National Autism Conference in Myrtle Beach, Nov. 10-13, call Jo Pike at (843) 687-5692.

Posted by Becca


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