Finding curses, saving lives.

When health insurance refused to cover their son's treatment for an extremely rare genetic disorder, Kathy and Rob Barr of Washington were desperate. Without a stem cell transplant, young Eli Barr would surely die from Hurler's syndrome. Even though the family offered a substantial down payment, the Seattle hospital still refused to perform the $300,000 procedure. "We even talked to the state of Washington," says Rob. "They said, 'If you give everything away that you have and declare bankruptcy, then we will pay for it.'

That suggestion appalled Rob, a nuclear engineer, and Kathy, a teacher." I think the hardest thing was to know that there was treatment available, but not to be able to get it," says Kathy.

Then the Barrs discovered St. Jude Children's Research Hospital, where families without insurance are never asked to pay. This facility also offered a new kind of stem cell transplant that was not available anywhere else in the country. Today, Eli Barr is an energetic high school freshman who has a passion for baseball, a love of animals, and an exciting vision for the future.

More Than Childhood Cancer

Eli Barr is one of about 19,000 patients with catastrophic diseases who have benefited directly from the lifesaving research and treatment available at St. Jude. Patients are accepted at the hospital regardless of race, sex, ethnicity, religion, nationality, or ability to pay for treatment. The child must be referred by a physician, is generally 18 years old or younger, and must have a disease that is currently under study at St. Jude.

Based in Memphis, Tennessee, St. Jude Children's Research Hospital first made its name through advances in the treatment of childhood leukemia. But since 1962, the hospital has taken on other childhood killers, including genetic diseases such as sickle cell disease and osteogenesis imperfecta (brittle bone disease); infectious diseases such as tuberculosis and AIDS; and numerous childhood cancers, including bone cancers, brain tumors, and soft-tissue cancers.

St. Jude provides the best available treatment for children with catastrophic diseases, but its research assures that this treatment remains on the cutting edge. Ultimately, this research may lead researchers and clinicians to cures for the devastating diseases of childhood. Current basic and clinical research at St. Jude includes work in gene therapy, bone marrow transplant, chemotherapy, the biochemistry of normal and cancerous cells, radiation treatment, blood diseases, resistance to therapy, viruses, hereditary diseases, influenza, pediatric AIDS, and psychological effects of catastrophic illnesses. St. Jude also conducts long-term biostatistical investigations on its patients and is the only pediatric research hospital that has been awarded a National Cancer Institute cancer center support grant.

Since 1962, St. Jude researchers have made amazing advances toward curing life-threatening childhood diseases. For example, when St. Jude opened its doors, acute lymphoblastic leukemia, the most common form of childhood cancer, was a virtual death sentence. Less than 4 percent of patients survived. Now more than 80 percent of these children go on to live healthy lives. Other previous killers such as Wilms tumor (a kidney cancer), retinoblastoma (a rare eye cancer), and Hodgkin disease (cancer of the lymph nodes) now have survival rates of more than 90 percent. In the summer of 2003, the hospital received approval from the Food and Drug Administration to begin testing another part of its HIV vaccine regimen. The hospital is beginning Phase I clinical trials tbr the second part of a three-tiered HIV vaccine designed to protect against diverse forms of the AIDS virus.

Hospital Without Walls

St. Jude accepts about 500 new patients every year. These new patients, along with other patients undergoing treatment at the hospital, are called "active" patients. Although St. Jude has approximately 4,300 active patients at any given time, the hospital only has 56 inpatient beds. St. Jude caregivers strive to maintain as normal a life as possible for the children and families, so patients are treated on an outpatient basis whenever possible. Hospitalization is only considered when all other options are exhausted.

For families who must stay close to the hospital for treatment, St. Jude offers housing in Memphis, transportation to and from the hospital, and meals for the patient and one parent. These services are offered at no cost to the family. Patients undergoing treatment for one week to three months stay at the Ronald McDonald House, while patients undergoing treatment for more than three months live in Target House. Until recently, St. Jude relied on Memphis-area hotels to house patients who must stay in Memphis for less than a week. That scenario will change in early 2004, with the completion of the Memphis Grizzlies House. Made possible by a $5 million pledge from the Memphis Grizzlies NBA basketball team, this facility will house 100 families in the heart of the St. Jude campus. Until construction of the Grizzlies House is completed, families are being housed at a nearby hotel at the hospital's expense.

Many St. Jude patients can receive care at local affiliates instead of traveling to Memphis. Described as a "hospital without walls," St. Jude extends its structured treatment and research to children through clinical, research, and academic partnerships with pediatric programs. A network of pediatric hematology-oncology clinics, hospitals, and universities are united to extend the mission of St. Jude. St. Jude currently has four domestic affiliates located in Peoria, Illinois; Johnson City, Tennessee; Baton Rouge, Louisiana; and Shreveport, Louisiana.

Sharing Knowledge Globally

Less than 30 percent of the world's children with cancer have access to modern treatments. Since its inception, St. Jude has sought to share its groundbreaking research and treatment with scientists and caregivers on a global scale.

St. Jude reaches out to the rest of the world by forming collaborations with medical institutions in other countries. Medical professionals from other countries are invited to spend up to six months as on-site observers at St. Jude. These observers learn about every aspect of the hospital's operation. For example, visiting surgeons "shadow" St. Jude surgeons, and visiting nurses participate in the training programs provided to St. Jude nurses. St. Jude caregivers also travel to international partner sites to share the latest techniques and medicines. St. Jude has developed, or is in the process of developing, partner sites in 16 countries: Brazil, Chile, China, Costa Rica, Ecuador, El Salvador, Guatemala, Honduras, Ireland, Jordan, Lebanon, Mexico, Morocco, Russia, Syria, and Venezuela.

Filling More Needs

When Danny Thomas founded St. Jude, the hospital consisted of a single, relatively small building staffed with talented researchers and caregivers who dreamed of saving children's lives. Now, the numerous buildings of the St. Jude campus cover several blocks of downtown Memphis, and those early pioneers' dreams are coming true. The hospital is more than halfway through a five-year, $1 billion expansion that will allow its scientists and doctors to save more of the world's children.

New additions include a Good Manufacturing Practices (GMP) facility, which will allow St. Jude to develop and produce vaccines and other life-saving biological products; the Integrated Research Center, which added 165,000 square feet of new laboratory space; and the soon-to-be-completed Grizzlies House. The expansion is allowing St. Jude to embark on more of the ground-breaking research for which it is internationally renowned. Current research includes developing more accurate and efficient diagnostic techniques for pediatric cancer and development of an AIDS vaccine.

The hospital's expansion is having a major impact on the Mid-South region. More than 3,500 employees work for St. Jude and ALSAC, the hospital's fundraising arm. One of the crown jewels of American pediatric medicine, St. Jude attracts patients, physicians, and some of the brightest scientific minds in the world to Memphis and Shelby County. Since the hospital opened, patients and employees have come to St. Jude from more than 60 countries around the globe.

The growth at St. Jude is also having a tremendous impact on the Mid-South economy. Younger Associates, a Jackson, Tennessee-based consulting firm, conducted a study in 2000 to estimate the economic impact St. Jude would have during its scheduled expansion, between the years 2000-2005. In 2000, through activities including heahhcare operations research and education, and fundraising efforts and events, St. Jude was responsible for adding $646.9 million to the area. In 2005, St. Jude is projected to pump a staggering $5.78 billion into the local economy.

In 2000, St. Jude supported 6,785 jobs in Memphis and Shelby County. This number includes St. Jude employees as well as outside workers who were indirectly supported by St. Jude--for example contractors, vendors, and consultants. In 2005, St. Jude is projected to support nearly 11,700 jobs. A growing St. Jude campus is good for science, good for Memphis, and great for thousands of other children like Eli Barr.

No place in the world does for children what St. Jude does:

1. St. Jude's groundbreaking development of combination therapy for children with acute lymphoblastic leukemia, the most common form of childhood cancer, revolutionized leukemia therapy worldwide and increased the survival rate from 4 percent, when St. Jude opened in 1962, to 80 percent today.