By Peter West
Society Publications, The Leukemia & Lymphoma Society

The bruise on Shawn Pavese’s hip just wouldn’t go away.

Pavese, a 32-year-old single mother from Wantaugh, New York, knew something was wrong. So did her doctor, who grew alarmed when test results came back showing that Pavese’s white blood cell count was way too high. An immediate referral to a hematologist-oncologist led to a startling diagnosis: Pavese had chronic myelogenous leukemia (CML).

“I couldn’t believe it,” says Pavese, now 38 and an account executive at a clothing company in New York City. “I wasn’t sick at all. I thought, ‘I don’t have time for cancer.’ I had a 3-year-old son, a job, a busy life. It was devastating.”

In 1998, CML patients had few treatment options. Pavese immediately went on interferon and hydroxyurea to help stabilize her cancer before it could develop into an acute phase. But she couldn’t tolerate the interferon, which caused panic attacks so severe she could barely leave her home.

Pavese needed a bone marrow transplant. She also needed support and information. At her family’s urging, Pavese reached out to her local chapter of The Leukemia & Lymphoma Society. The patient services manager suggested Pavese sign up for First Connection, a program that links newly diagnosed patients to a peer volunteer who has experienced a similar diagnosis. Last year, more than 2,000 Society volunteers made 4,700 “first connections.”

Pavese agreed to join the program, and within a few days, a young mother who had recovered from CML called to talk about her own journey from diagnosis to cure. This peer support filled Pavese with hope and gave her the strength to leave her young son with her family and set off on a 3,000-mile journey to the Fred Hutchinson Cancer Research Center in Seattle for the bone marrow procedure.

“I couldn’t have made the move to Seattle without the love and support of my family and the information and resources of the Society,” says Pavese, who is now cancer-free. In fact, her First Connection experience was so positive, she has become a volunteer mentor herself.

First Connection is one of many programs the Society offers through its 62 chapters, says Robin Kornhaber, MSW, the Society’s senior vice president of patient services. “These programs are at the core of our mission to improve patients’ and families’ quality of life.”

Other programs include Meet the Expert and Meet the Doctor programs, teleconferences and webcasts, support groups, information on the latest clinical trials and treatments, patient financial aid, and workshops addressing survivorship issues. The Society also connects patients, families, and caregivers to oncology nurses and social workers through its Information Resource Center (800-955-4572). Last year, the Society made more than 445,000 patient contacts.

In addition, the Society is the leading private funder of leukemia, lymphoma, and myeloma research. Since its founding in 1949, the Society has supported nearly $360 million in research—$40.1 million last year alone.

To maximize every dollar, the Society funds leading researchers through a triumvirate of programs:

The Specialized Center of Research (SCOR) Program is the Society’s largest and most innovative research initiative. Every recipient works with a cross-disciplinary team of leading researchers from their own and other universities and medical institutions. In the past four years, SCOR has funded, or committed to fund, $67 million in research.

The Translational Research Program (TRP) supports research that shows strong promise for translating basic biomedical knowledge to new treatments that will ultimately prolong and enhance patients’ lives. Since its launch in 1995, TRP has funded nearly $100 million in research.

The Career Development Program provides stipends to investigators in the early stages of their careers, allowing them to devote their time to leukemia, lymphoma, and myeloma research.

“This is an exciting time for research,” says Alan Kinniburgh, PhD, the Society’s vice president of research administration. “Right now our organization is funding top researchers who are exploring areas such as molecularly targeted drugs, radioimmunotherapy, cancer vaccines, and gene therapy. We expect this research to yield tangible results that lead to new blood cancer treatments.”

“It’s all about making connections,” adds Kornhaber. “Connecting patients to services, researchers to funding, and building bridges between researchers, patients, and new treatments and support. That’s what we’ll keep doing until we have blood cancers beat.”

To learn more about The Leukemia & Lymphoma Society, visit their website at www.lls.org or call 800-955-4572.