Alex DeVinny was a runner, but her parents want to make sure that other young women aren't headed down the same path.

Alex died three years ago at the age of 20 after a notable amateur athletic career that included a state title in track. Her battle with anorexia nervosa, the disease that led her to her death, didn't draw the same public attention.

In just a few weeks, the first conference on anorexia and female athletes will be held at the University of Wisconsin-Parkside, sponsored by the Alex DeVinny Memorial Fund.

Alex's parents, Lana and Doug, began the foundation with money contributed for Alex's funeral. She is a social worker. He is interim associate provost at the university and also a professor of art. The conference will educate people about the problem of anorexia, but it is rooted in research. The fund was set up to further both research and outreach.

"In my opinion you can't prevent something if you don't understand what is is you're preventing, so that's why the research piece was so very important to us," Lana said.

The outreach conference will be an outreach of experts. A group of researchers from Duke University, one of whom has received a grant from the foundation, are scheduled to speak as are people from the Medical College of Wisconsin.

There are conferences on eating disorders, but not very many, Doug said. That seems odd considering the number of years that anorexia has been talked about publicly.

"I think they have studied it some, but I think the research is greatly lacking," Lana said. "But many mental health disorders … money for research is lacking."

"It's the underbelly of health care really," Doug said.

"And it's also; there's that stigma attached to mental health issues," Lana said. "If somebody said they had cancer, diabetes, well yeah, we need to do research and all that. Somebody says they have schizophrenia or they have an eating disorder, well that's your problem.

"And I think many people think it's a lifestyle, a life choice as opposed to an illness. And it is an illness," she said.

Coach power

Many young people with eating disorders are perfectionists, Doug said. Alex certainly was. Each race had to be better than the last, each achievement greater, he said. They have talked to parents struggling with the eating disorders of their own children - the conference will go a step farther. They hope to attract people who interact with young people regularly - parents, school counselors, teachers and especially athletic coaches. Through the years of Alex's athletics, the DeVinnys learned about the importance of coaches.

"You get to know the power that a coach has, the influence," Doug said.

"These girls put them up on pedestals," said Dr. Anne Z. Hoch of the Medical College of Wisconsin, one of the conference speakers. "They want to play. They want to perform. If the coach tells them to do something they do it."

Hoch is an associate professor in the Department of Orthopedic Surgery and director of the Women's Sports Program, and she knows what happens in young female athletes.

Sometimes what coaches do is harmful, Hoch said, such as one who weighed all the members of his team and posted their weights on a wall. There are coaches who pass-on misinformation such as one who told his athletes that taking birth control pills affects running performance, which is untrue, Hoch said.

"In my experience it has gotten better in the last 10 years, but there is still a huge knowledge deficit between coaches and physicians," she said.

"We don't know all the answers to why girls get eating disorders," Hoch said. It is important that parents do all they can to increase their daughter's self-esteem. "I think that's the root of it. If they have poor self-esteem, then they're going to start making bad choices and bad decisions."

It's also critical that young women or girls participating in sports, even those in elementary school, should see a sports dietitian to ensure that their calorie and fluid intake is sufficient, she said.

Not simple

As parents, the DeVinnys understand the family friction which can grow from dealing with an eating disorder. Alex had hers from the age of 9. And they grasp the conflict of wanting a child to eat while worrying that acquiescing to a child's food preferences merely enables the disorder.

"It is almost like another person, that Alex used to be told how to eat and how to behave and how to approach food," Doug said. "And to try to talk to her, then you were also almost having to talk with the disorder itself."

"That sounds crazy," Lana said. "Alex loved food and loved to eat."

"And it took us a long time to figure out there was this more insidious darker part of the thing that was really torturing her," Doug said.

If You Go

What: The Running on Empty eating disorders conference sponsored by the Alex DeVinny Memorial Fund.

When: Friday, March 20,

8 a.m. to 3:45 p.m.

Where: UW-Parkside Student Center

Fee: $75

More Info: Felicia Stallworth can be reached by phone at

(262) 595-2312 or by e-mail at: felicia.stallworth@uwp.edu

Her mailing address is: University of Wisconsin-Parkside, P.O. Box 2000, Kenosha, WI 53141-2000