At 18 months, Jimmy Reagan was a happy, healthy, affectionate toddler. Then something happened. By the time he turned 2, Jimmy was frail and strangely agitated. He quit speaking, and he cried all the time. His parents were frantic.
In 1996 Jimmy was diagnosed with autism, a disorder that involves impaired social interactions and language difficulties but also can include a range of other medical problems. In Jimmy’s case, not only was his communication affected, he also had chronic ear infections, food allergies, gastrointestinal problems, and mouth pain.
Today, the number of children suffering from problems like Jimmy’s is skyrocketing. And experts at the University of Minnesota—from pediatrics, developmental biology, genetics, neurobehavioral development, and clinical services—have come together to try to solve this medical puzzle.
Helping to advance this enormous undertaking is a $1 million challenge fund established by Alfred and Ingrid Lenz Harrison to support the University’s new Autism Spectrum Disorders (ASD) Initiative. This collaboration between clinical, research, and basic science programs at the University promises to conduct breakthrough research and establish a coordinated care model for children with autism.
A perplexing and multifaceted problem
The approach is necessary, University experts say, because autism is not a single disease. “With autism, we may be looking at a disorder as complex as cancer,” says Scott Selleck, M.D., Ph.D., professor of pediatrics and director of the Developmental Biology Center at the University. “There are more than 100 susceptibility genes involved in cancer. Our goal is to identify all the different genetic sources of autism, whether there are 20 or 40 or 500,” says Selleck, who holds the Martin Lenz Harrison Land-Grant Chair in Pediatrics, established by the Harrisons in memory of their son Martin.
Recognizing that the study of a disorder this complex will require significant financial resources, the Harrisons pledged to match up to $1 million raised for the ASD Initiative by December 31, 2007, to help fund basic science research.
“Scott Selleck and his team are clearly tackling a problem that’s unbelievably widespread,” says Alfred Harrison. “So it was natural for us to support this, but my wife and I decided to do it in a way that would also encourage others to engage in this project.”
Today, 1 in every 150 children—and 1 in every 94 boys—is diagnosed with autism. Approximately 1.5 million Americans have received that diagnosis, and the number could reach 4 million within 10 years. What’s more, autism is a particularly difficult condition to treat.
“Diagnosis is typically uncertain at first, and families may weave through a number of evaluation facilities or health-care providers,” says Michael Reiff, M.D., medical director of the University’s Autism Spectrum Disorders Program. “We need to address the medical, behavioral, emotional, develop-mental, and learning needs of these children while helping parents coordinate their care.”
Searching for a genetic key
No one knows this better than Jimmy’s mother, Peg Reagan, who helped establish the University’s ASD Initiative and is raising awareness about the necessity of coordinated care for children with autism.
“There are so many forms of autism; two kids with the same diagnosis can have entirely different symptoms,” says Reagan, who has made generous donations to this initiative with her husband, Brian. “Figuring out the underlying genetics is key to finding the medical interventions that will work.”
That’s where Selleck’s research comes in. “I had an idea for a project that involved getting DNA samples from the families of kids with autism and studying the genetic links,” Selleck says. “Then I met Peg Reagan, and she and I discussed the potential impact of this type of research. Last year, working with the Minnesota Medical Foundation and Department of Pediatrics leaders, we set down objectives and decided how much money we’d need and how it would be used.”
He also mentioned the initiative to the Harrisons. “They’d always said, ‘If there’s a special need, let us consider it,’” Selleck says. “So I approached them. I didn’t ask for an amount; I just said, ‘Here is the need.’”
That’s all it took. “We made our gift because we want to help find the causes of autism,” says Ingrid Lenz Harrison. “If there is any way to cure this disease or prevent it from happening in the future, that would be our greatest hope.”
Their gift, says Selleck, was stunning. And it sparked an immediate response: In March, 550 runners participated in the 5K Run for Research, organized by three University faculty members, which raised more than $6,000 for the initiative. Now, supporters of the ASD Initiative are hoping the greater community will get involved.
“The Harrisons’ gift is huge because it serves as an example,” says Michael Georgieff, M.D., professor of pediatrics and child psychology and director of the Center for Neurobehavioral Development. “With the challenge fund, we can go to other prospective donors and say, ‘These people have pledged $1 million of their own money to solve the problem of autism. What are you willing to do to help?’”
To make a gift or learn more about supporting the Autism Spectrum Disorders Initiative, please contact Elizabeth Patty at the Minnesota Medical Foundation, 612-273-8638 or e-mail her at firstname.lastname@example.org