The Leukemia & Lymphoma Society Is United for Support, Research, and, Ultimately, a Cure
by Diana Price
If your child is diagnosed with acute myeloid leukemia at 11 months, it’s not exactly a topic that the other moms at playgroup are going to know a lot about. Where do you go for information and support? In Ruby Markley’s case, the 31-year-old mother from Burke, Virginia, took advantage of the Leukemia & Lymphoma Society’s First Connection program to reach out and connect with another family with a similar diagnosis. She was put in touch with Lori Ruderman, whose child underwent a similar experience.
“It was so helpful,” Ruby says. “I got a great deal of information from her that I was able to go back to the doctor with to ask the right questions. And she gave me a lot of hope because her son went through the same thing and was doing well. At the time I was questioning everything, and she was so helpful.” Ruby’s daughter, now 18 months old, is through with her treatment and in good health.
The First Connection program, in which newly diagnosed patients are linked with peer volunteers who have experienced a similar diagnosis, is one of many patient support services that the Leukemia & Lymphoma Society has created to serve people whose lives have been affected by a blood cancer diagnosis. Other critical elements of the society’s patient support program include family support groups; the Information Resource Center ( 955-4572), staffed by master’s-level social workers, nurses, and public health educators; and an award-winning Web site (www.lls.org) that provides information ranging from the latest news on treatments, to guidance finding clinical trials, to listings and registration information for free educational webcasts and teleconferences offered by the Leukemia & Lymphoma Society.
In addition to the patient support services that provide invaluable resources, the society is dedicated to identifying and funding critical blood cancer research. When Rudolph and Antoinette de Villiers founded the society in 1949 after losing their 16-year-old son to leukemia, they believed that a concerted partnership among public, academic, for-profit, and nonprofit sources was needed to fund cancer research. Fifty-eight years later, the de Villierses’ vision has proved correct. While pharmaceutical companies and government agencies provide significant funding for research, the society and other large nonprofits play a critical role in identifying and helping support leading-edge science.
Some of the important blood cancer research that the society has helped fund includes work toward chemotherapy, bone marrow and stem cell transplantation, and new, targeted oral therapies like Gleevec® (imatinib mesylate). Gleevec, which has become the frontline therapy for chronic myeloid leukemia (see our interview with Dr. Brian Druker on page 59), has been an especially exciting research project for the society to be involved in, and its continued support in Dr. Druker’s research was critical to the drug’s development at each stage.
The funding for research like Dr. Druker’s and for the programs that the society provides comes from individual, foundation, and corporate donors who believe in the society’s mission to cure blood cancer and improve the quality of life of patients and their families. One of the most recognized of the society’s fundraising efforts is the Team In Training® (TNT) campaign, the world’s largest endurance sports training program. Since its inception in 1988, TNT has prepared 320,000 people to run or walk a marathon or half-marathon or participate in a triathlon or 100-mile cycling event. Participants, in turn, have raised more than $750 million to fund cancer research and patient services. In exchange for raising funds, participants receive four to five months of personalized training by certified coaches, a supportive group of teammates, and travel arrangements to the event of their choice.
Chronic myeloid leukemia (CML) survivor Barbara Garrison, in remission thanks to Gleevec after 14 years of battling the disease, ran the Walt Disney World marathon with TNT in January 2003. For Barbara the experience of raising funds for blood cancer research and empowering herself through the personal physical experience had an added dimension of meaning: Dr. Brian Druker—who also happens to be an accomplished marathoner—also ran the marathon for TNT that day.
“My strength to participate in that marathon came from the faces of the people I had met along the way—some who made it, some who didn’t, but all of whom pinned their hopes on the promise that science would someday find a cure for CML,” Barbara recalls. “It was a thrill to do that marathon with a man who was making history. He is the reason I’m alive today.”
Experiences like Barbara’s, which so clearly illustrate the connection between research, fundraising, and patient support, exemplify the mission of the
Leukemia & Lymphoma Society. Through the work of its main office in White Plains, New York, and its 66 chapters across the country and in Canada, the society strives to provide patients and researchers with the resources they need to face the challenges that blood cancers present, while offering invaluable hope to all those touched by these diseases.
For more information about the Leukemia & Lymphoma Society, visit www.lls.org.