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Intellect

Sons with cystic fibrosis send couple on medical odyssey

When Valerie Hudson's son was diagnosed with cystic fibrosis in 1997, she was shocked since she did not know that she and her husband were carriers of the recessive genetic trait that causes the disease.

Three days later a friend lent them "Lorenzo's Oil," a movie about a couple with no medical training who seek to find a cure for their terminally ill son. After watching the emotional film, Hudson discussed with her husband, a landscape architect, the possibility of quitting her job and going to medical school to learn more about their son's condition. Ultimately, they decided that she would make cystic fibrosis research her avocation instead.

"We just felt strongly that there was something we could do," says Hudson, a professor of political science at Brigham Young University. After meeting other cystic fibrosis patients and family members who pursued understanding of the medical literature, "I began to think, 'Maybe this isn't tilting at windmills.'"

After learning basic biochemistry from textbooks, Hudson began her inquiry by devouring almost 1,000 abstracts of the presentations made at the two medical conferences on cystic fibrosis held annually in Europe and North America. She found that researchers were pursuing gene therapy that could outright cure the disease, but that solution was -- and still is -- years away.

"The big prize is gene therapy, and if you're really going to make your mark in cystic fibrosis that's where you'd make it," says Hudson, who anxiously awaits a cure and now has two more sons with cystic fibrosis. "But until then, my boys and other people's children are still sick and will get sicker each passing year."

Interested in ways of preventing the symptoms brought on by the genetic abnormality, Hudson learned of an online resource produced by the National Institutes of Health called PubMed that abstracts hundreds of medical journals (www.pubmed.gov). She searched those archives and identified the articles she needed, then found them through BYU's library and pored over them at home. She has gathered thousands of articles this way -- the stack of photocopies stands more than four feet high.

About a year after her research began, a former student and friend of Hudson's died of cystic fibrosis.

"At that time I got really discouraged -- I came to realize just how complex the body is and how difficult it is to understand," she says. But then she read an unheralded study published in August of 1998 that pointed her toward glutathione, a biochemical, as a primary factor in her son's disease. Months of further research backed up the hypothesis.

Once she had an idea and an explanation for the chemistry behind it, Hudson sought professional researchers to test her hypothesis by giving a solution of glutathione to cystic fibrosis patients to see if it helped alleviate symptoms.

Pregnant with her fifth child, Hudson drilled her husband, David, in the science of her findings and sent him in June of 1999 to the European conference of cystic fibrosis researchers in The Hague, Netherlands. He was allowed to present a poster on her hypothesis. The night David returned home with the promising news, Hudson was in labor. Their baby was diagnosed with cystic fibrosis shortly thereafter.

In October 1999, David attended the North American conference of cystic fibrosis researchers in Seattle. He was not allowed to present his poster but attended a roundtable discussion where he met Henry J. Forman, a cystic fibrosis researcher at the University of Alabama-Birmingham who was also exploring the role of glutathione. Forman, co-editor of the journal Free Radical Biology and Medicine, told Hudson's husband that she could submit her research for peer review.

After refining her paper, Hudson submitted it in the spring of 2000. That summer, still trying to find a researcher who would conduct a clinical trial, Hudson consulted the chair of BYU's chemistry department.

He referred her to his former student Clark Bishop, then the medical director at the county's largest hospital. Bishop agreed to introduce Hudson to the area's cystic fibrosis researchers. He was so disappointed by their indifference to her hypothesis that he told her he would conduct the trial himself, provided she could raise the $50,000 it would cost. After the publication of her journal article, the pair raised the necessary money and conducted the trial in 2002.

"I didn't do any primary research -- I just looked at the output of many different scientific communities and most of them had a piece of the puzzle," Hudson says. "I give PubMed the credit -- the diversity of journals that the NIH abstracts is so immense, that I could cross these disciplinary boundaries with impunity."

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