Karen DeLong Parles (1959-2009)
"Some men see things as they are and say, 'Why'? I dream of things that never were and say, 'Why not'?" -- Robert F. Kennedy
“Action is character.” -- F. Scott Fitzgerald
When Karen’s chest X-ray during a minor illness in the fall of 1997 was read as pneumonia, no one gave it any thought. She had been coughing for a while, and she didn’t feel well. Her cough resolved after a course of antibiotics, and she felt better. When her follow up film showed a persistent abnormality, everyone reassured us. She was thirty-eight, with no risk factors. The lesion would be benign. A few weeks later she was diagnosed with advanced lung cancer with spread to her pleura, and everything changed.
Karen was born in Reading, Pennsylvania, raised by wonderful parents in West Hartford, Connecticut, and educated at Williams College, where she studied Art History. She worked in publishing for five years before deciding to return to school to become an art librarian, working first at the Metropolitan Museum, later at The Frick Collection, both in New York. Karen’s area of interest was in creating electronic catalogs and databases of art collections. She was an early adopter of internet use and a champion of the power of electronic research.
When Karen’s lung cancer was diagnosed, our children were eight and seven.
Soon after diagnosis, Karen realized that lung cancer patients and their families were woefully underserved. Along with the dismal prognosis that most lung cancer patients faced, there was a dearth of resources for those who wanted to educate themselves about their illness. Galvanized to action, Karen created LungCancerOnline.org, a website devoted to education and support of lung cancer patients and their families. Working out of our home, she created a site that gave access to the most current and reliable information about lung cancer and its treatment. She answered dozens of emails every day from patients and their relatives, steering them toward quality information and care. Her site top rated on Google, Karen helped lead the first wave of lung cancer advocacy, dragging the leading edge forward to try to provide information and support, improve quality of care, and erase stigma. Her website later became a component of the LungCancerOnline Foundation, which raised funds to sponsor research. Through the site, her speeches and her publications, Karen continually challenged and prodded members of the lung cancer community to do more, to do better. She was widely networked with the most prominent lung cancer physicians nationwide, serving on committees and boards and in study groups to improve the lot of those with lung cancer.
During her last two years, her illness progressing, Karen became unable to maintain the site and it drifted out of date. Given her great respect and admiration for the work that Lung Cancer Alliance was doing, I donated LungCancerOnline.org to LCA after Karen’s death in 2009 and became a member of LCA’s national board. LCA’s staff has worked diligently to revitalize the website, and I am extremely proud and gratified to reintroduce it to you.
Karen was a firebrand who did not comprehend the word no. She worked through illness to make things better for others than they had been for her. Her strength, courage and determination allowed her against long odds to see her children grow up. She was a daughter, a sister, a mother, and a wife like none other.
Jamie Parles, September, 2012