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Dana Delany joins the fight against hard skin illness

  • Story Highlights
  • Dana Delany's role in TV movie "For Hope" taught her the effects of scleroderma
  • The chronic, degenerative disease can cause skin thickening or tightness
  • Delany's hero, Luke Evnin, is working to raise awareness, find a cure
  • "If anybody's going to solve this problem, it's going to be Luke," she said
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BALTIMORE, Maryland (CNN) -- Hollywood glitz may pay Dana Delany's bills, but her "most life-affirming role" was a lot less glamorous.

Luke Evnin heads the Scleroderma Research Foundation, and actress Dana Delany is a board member.

Luke Evnin heads the Scleroderma Research Foundation, and actress Dana Delany is a board member.

In 1996, the Emmy Award winner and "Desperate Housewives" actress played a patient dying of scleroderma in the ABC TV movie, "For Hope."

The film was based on the true story of actor/comedian Bob Saget's sister, Gay, who died of the chronic, degenerative disease.

"When you're playing someone who's dying, all you want is life," Delany recalled. "It really educated a lot of people about the disease, including me."

The role led Delany to join the movement to find a cure for the illness. Today, with scleroderma patient Luke Evnin helping to lead the efforts, Delany said that people are increasingly aware of the disease and working toward a cure.

Symptoms for scleroderma, Greek for "hard skin," can include skin thickening or tightness. It has no known cause and in most serious cases, it can be life-threatening. Scleroderma can cause abnormal growth of connective tissue and potentially harm blood vessels and internal organs.

More than 300,000 people suffer from scleroderma-related diseases, according to the National Institutes of Health. The disease disproportionately affects women of child-bearing age, but anyone can contract it, including children.

"So many people are disfigured," Delany said. "They don't want to go out in public and they don't want to talk about it."

In 1999, Delany joined the board of the Scleroderma Research Foundation, a nonprofit corporation in San Francisco, California. When its founder, Delany's friend Sharon Monsky, died from the disease in 2002, Delany was introduced to Evnin, the new foundation chairman. The two became instant friends.

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Evnin -- a successful venture capitalist with a doctorate in microbiology -- was a "perfect storm" for the foundation and for scleroderma research, Delany said.

"It was almost a miracle, really," she said. "Here was this handsome family man who didn't look sick at all, but his experience made him the perfect person to be running the board, on many levels. He understands the science. He understands the money that needs to be involved [and] how to invest it. He understands how to talk to the researchers."

Diagnosed with scleroderma in 1998, Evnin, 45, considers himself lucky.

"I have a lot of hidden symptoms, but [they] are stable and I won't die from scleroderma. I'm on the fortunate end of the spectrum," said Evnin. "Scleroderma is being misdiagnosed all across the country and a misdiagnosis can be fatal."

Evnin works full-time as general partner for a multi-billion dollar biotechnical and life sciences venture capital firm, while dedicating his "spare time" and resources to his volunteer job as the foundation's chairman.

He oversees 10 scleroderma research programs; works with pharmaceutical companies, researchers and physicians on new medications and treatments; and reviews proposals to determine which institutions and researchers will benefit from the foundation's average annual dispersal of more than $1 million in research grants.

"The patients out there are counting on me. I want to deliver for them," Evnin said. Video Watch Delany talk about some effects of scleroderma and Evnin's strides toward a cure »

Since Evnin joined the Scleroderma Research Foundation, more than $10 million has been raised for research and many world-renowned scientists and research programs are joining the search for a cure.

"We've made inroads and there are new therapies and treatments for patients that can change their lives," said Evnin.

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Delany said Evnin gives much of his own money toward research, and she calls his efforts and accomplishments on behalf of the thousands of scleroderma patients "nothing less than heroic."

"If anybody's going to solve this problem, it's going to be Luke."

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