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 . 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 do n't want to go out in public and they do n'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 . 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 did n'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 wo n'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 . 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 . 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 . ''
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 . In addition to being a great actress and an accomplished director, she is also a passionate advocate for people with MS. ` ` If anybody 's going to solve this problem , it 's going to be Luke , '' she said .