The Phoenix Business Journal, 02/04/2003

The Arizona Diamondbacks Charities gave US$200,000 to the Southwest Autism Research and Resource Center(SAARC) at a fund-raising breakfast on April 2. 

When Rich Dozer, president of the baseball team, walked into the Arizona Biltmore Resort & Spa for the fundraiser, he was prepared to give $100,000. He already had the cheque written out, speech in hand. By the end of the event, attended by 1,000 business and community leaders, Dozer said he was "so moved" that he wrote out another $100,000 cheque, doubling the donation.

Called the Grand Slam Award Grant, the donation was the first of its kind given by the Arizona Diamondbacks Charities. 

The SARRC was selected from more than 80 non-profit-making organisations applying for the Grand Slam grant. The money will be used to develop new Arizona training camps for exceptional children, Dozer told the crowd, which included Arizona's state governor, Janet Napolitano, and the Mayor of Phoenix, Skip Rimsza. 

At the Diamondbacks' third game of the season against the Los Angeles Dodgers on the night of April 2, all the D-Backs players were to wear a special hat with the autism symbol, a purple ribbon with a piece of a puzzle, depicting the missing piece of information to find a cure for autism. Dozer told the group he would be auctioning the hats after the game to raise even more money for the autism group. 

Greg Swindell, a former pitcher for the Diamondbacks, gave a tearful testimonial about his son Dawson, who was diagnosed with autism when he was 18 months old. Pitcher Greg Swindell was happy to hear that. He spoke at the breakfast about his two-year-old son, Dawson, who was diagnosed with autism six months ago.

"As you know," Swindell said, stopping to control his quavering voice, "it (autism) has hit home with us."

He thanked friends for supporting his family and Dawson, "the loving boy that he is."

Swindell also thanked his wife, Sarah. "If you could see the smile that he has when she walks in the room, I think everyone would write a cheque for $100,000," Swindell said.

The Swindell's fourth child and first boy, Dawson was developing normally. But at 15 months, "he stopped using his words" and began flapping his hands, a repetitive movement often found in autistic children.  By 18 months, Dawson was diagnosed as moderately to severely retarded and the doctor explained he had autism.

"No one can ever prepare you to hear those words," said Swindell's wife, Sarah. "I wanted it to go away. I wanted it to be a mistake."

She said that, before the diagnosis, she often wondered what her son would grow up to become - whether he would be an athlete like his dad or a doctor. But now that Dawson is "in a world of his own," all her dreams for him are shattered. "No one can ever prepare you to hear those words that your child's life is over," she said. 

The Autism Center's founder and president, Denise Resnik, told a similar story about her son, Matthew, 11. Explaining that her family's experience with autism spanned a decade, Resnik said she had been resigned to the fact that autism was "an intractable disorder that will be with us forever."

But there is new hope for parents of autistic children. The Translational Genomics Research Institute, TGen, said at the fund-raising breakfast that it has forged an alliance with the SARRC to search for a cure for the neurobiological disorder. 

"We're all going to work as hard as we humanly can to figure this out," said Dietrich Stephan, director of the neurogenomics programme at TGen. "What I would love to do is have sitting within the labs of TGen this SARRC autism research centre." 

Now that the centre has formed a collaboration with the state's new genetics research group to find a cause and cure for autism, Resnik said she was hopeful her daughter, Allyson, 13, might be able to grow up "without the burden of knowing that she'll have to take care of her little brother" for the rest of his life.

The alliance between the autism center and TGen marks the first for the genetics group. Phoenix's Mayor, Skip Rimsza, recalled after the event that city leaders were still courting TGen about a year ago. "It's amazing how quick the link was made" between the two groups, he said.

Jonah Shacknai, the event's master of ceremonies, and chief executive officer of Medicis Pharmaceuticals, likened the fight against autism to the American POW who was freed in Iraq on April 1. 

"It struck me," he said, "that the parents of autistic children must feel like they are prisoners of a different kind of war. These kids are prisoners of the war on autism, and we've got to liberate them." 

"We've always thought that the answers (about autism) would come only after studying the interaction between the environmental and genetic milieu that children are exposed to," said Raun Melmed, Southwest Autism's medical director. The alliance, he added, "just seemed like a marriage that had to happen."

Dietrich Stephan, who joined TGen on as its director of neurogenomics on April 1, said he was eager to "make a difference in the lives of autistic kids."

The collaboration is the first for TGen, a public-private group with ties to Arizona's universities and funded by tax-payers, corporations and private donations.

"There will be more," TGen spokeswoman Francie Noyes said. "This is the model we hope to use with local and national researchers."

Headed by Jeffrey Trent, a genetics researcher formerly with the National Institutes of Health, TGen is researching the inherited aspects of breast cancer, melanoma, prostate cancer, diabetes and other chronic diseases.

The alliance with the autism center in Phoenix will give TGen researchers access to patients, their families and doctors for genetic testing and possibly treatment and interventions.

This is not the first effort to understand the genetics of autism. Several research groups have been trying to decipher it for years, believing that five to 20 genes may be involved.

TGen's Stephan said that high-powered computers which can wade through millions of genetic codes should speed discovery.

But he said it would be unfair to families to provide a timetable for finding a cure. "All I know is that we have a team in place that can do it faster than anyone else in the world," he said. "We're hoping to make Phoenix a national hub for autism research."