It was 1944 when Robert Roesler de Villiers died at age 16 of leukemia in New York City. Disenchanted that not a lot had changed in the research and treatment of the disease in the years following their son’s death, Rudolph and Antionette de Villiers established the Robert Roesler de Villiers Foundation in 1949 in a modest space on Wall Street. Years later, to reflect a commitment to curing all blood cancers, the organization’s name was changed to The Leukemia & Lymphoma Society (LLS).
“How can one person change the world?” poses Debbie Kersting, executive director of The Leukemia & Lymphoma Society’s Gateway Chapter. “Well, this family actually did, because now LLS is a $300-million machine set up to fight blood cancers! We have grown through research, financial assistance to patients, education and awareness, and more important, we have actually increased survival rates for leukemia patients to about 93 percent. So, I would say our organization is life-changing.”
Blood cancer, which includes leukemia, lymphoma and myeloma, is the No. 3 cancer killer in North America, according to Kersting. “The statisics are horrible!” she says. “It’s also the leading cause of cancer deaths for children younger than 20, and terrible as that is, it affects adults 10 times more.”
Kersting explains that great strides have been made through the years with positive findings aiding in the research for other cancers, as well. “Almost half of the new cancer drugs that have been approved in the U.S. by the FDA since 2000—that’s 21 out of 50—were approved to treat blood cancers,” she notes. “What we are finding is that this research is able to support other cancers, like breast, prostrate, lung and pancreatic cancers, as well as melanoma.”
With more than 1 million current blood cancer patients in the world, the Gateway Chapter serves 5,000 individuals and their families in eastern Missouri, southern Illinois and all of Arkansas, according to Kersting. “The Gateway Chapter will not stop until we find a cure—the statistics are just unacceptable,” she says. “In the meantime, we are supporting our patients by improving their quality of life with education and financial assistance.”
That financial assistance sets this organization apart from others. “We do something that many nonprofits do not do—we actually provide co-pay assistance to our clients,” Kersting explains, adding that during the last fiscal year, the Gateway Chapter gave away a total of $1.2 million in co-pay assistance. Other assistance and care provided includes organizing support systems for patients and their families and education materials, even for the very young—like the children’s book, Johnnie & Bloopee Meet the Droplette of Life, written by local author Michelle Bain.
Throughout the year, Kersting says several events provide financial support to the Gateway Chapter, including its Light the Night Walk (Sept. 28 in Forest Park), Team in Training, Man and Woman of the Year Grand Finale Celebration and Pennies for Patients through its School and Youth programming—which raised $400,000 this past year.
“In 1945, when the de Villiers lost their son, most leukemia patients died within three months of diagnosis. But they believed that with proper research, funding and education, there could be a cure. That was quite a vision,” Kersting says. “Well, I really feel confident—with our national office and our research team—we will cure cancer, and we will cure all cancers because of the efficiencies and the revelations through research. It is life-changing.”
Volunteer: JoAnn Shaw
When it comes to the challenge of finding a cure for cancer, it’s personal for JoAnn Shaw, who is VP and chief learning officer at BJC Center for Lifelong Learning and serves as chair of the board of directors of The Leukemia and Lymphoma Society Gateway Chapter. “I am a survivor. My husband is a survivor,” she declares. “I think I would call it a passion—it is personal for me and anything that will help raise awareness and money to fund research to find a cure is critically important to me.”
Shaw began her career in the health care field at Children’s Memorial Hospital in Chicago, and working in the industry for more than 25 years, she has witnessed the ravages of the disease. “Especially compelling to me is leukemia and lymphoma in little people,” she explains. “I have witnessed the impact on these children and their families, and we just have to do something to eradicate this disease. These kids are our future.”
At a recent Gateway Chapter fundraiser, Shaw recalls an emotional speech given by a young patient. “There was this little boy who ended his speech to this room of donors at The Ritz by saying, My name is Evan, and I am a survivor. And I am a conqueror. And I want to grow up to help find a cure for this disease. I mean, if that doesn’t bring tears to your eyes and inspire you…and well, my husband, at that point, reached over and wrote another check,” she says. “We need to raise more awareness. I don’t think people realize the research being done by LLS on blood cancers will ultimately help us find a cure for all cancers.”