The philanthropist, whose full name is Robert Wood Johnson IV, is a member of the founding family of the Johnson & Johnson worldwide healthcare corporation. In establishing the Alliance for Lupus Research, he and other family members have made a multimillion-dollar commitment to funding the best and most aggressive research that could lead to significant improvement in the lives of victims of the auto-immune disease.
"All the donors' money goes to research," Johnson told United Press International in a phone interview. "No overhead. The board pays for the operating expenses."
Johnson said the alliance would like to increase the amount of money raised privately for lupus research in the United States from $3 million to $50 million per year. A lunch last summer with the New York Jets raised $1.5 million.
"We're at a running rate of about $15 million right now," Johnson said. "We're starting a walk program across the country."
On Wednesday night, the alliance will hold its annual dinner at the Waldorf-Astoria in New York. Robert W. Pittman and Richard D. Parsons, AOL Time Warner co-chief operating officers, will be honored at the event, at which CNN anchor Paula Zahn will be master of ceremonies. Actor-director Michael Douglas and other celebrities are expected to attend. Johnson estimates that the charity dinner will raise between $1.5 million and $2 million.
"My daughter has juvenile diabetes, and about 10 years ago I became chairman of the Juvenile Diabetes Research Foundation," Johnson explained. "We now raise from $125 million to $150 million per year just for researching the cure and treatment and prevention of juvenile diabetes.
"After another member of my family was diagnosed with lupus about six years ago, I looked around and saw that there was really no organized research attack on the problems facing people with lupus. And so we started the Alliance for Lupus Research basically modeled on the Juvenile Diabetes Research Foundation ... grass-roots based, to raise money to fund peer-reviewed research."
Ralph Snyderman, chancellor of health affairs at Duke University Medical Center, runs the alliance's scientific advisory board, which sets the research objectives. Snyderman recruited to the board eminent researchers in basic and applied science from industry and academia.
Grant proposals are graded by peer review, Johnson said, and the alliance funds those rated highest.
Lupus is a very hard disease to diagnose because it often mimics other illnesses or has transient symptoms. Although it can occur in children, older people or men, nine out of 10 victims are women. In most cases, symptoms first appear during childbearing years. In the United States, it is three times more common among African-American women. It is also more prevalent among women of Hispanic, Asian and Native American descent.
In lupus the body's immune system is directed against its own tissues, causing life-threatening damage to such major organs as kidneys, lungs, the heart and the nervous system. For some reason, the incidence of lupus has tripled during the past four decades.
"What do we have to know to have an impact on this disease and the million or so mostly women who have it?" Johnson asked.
He said the alliance fills a function between the huge federally funded effort by the National Institutes of Health and the research done by the pharmaceutical companies.
"We try to translate the NIH research into clinical trials targeting specific science that we think will make a difference," he said. "News the patient can use."
The executive characterized the alliance's research as having a higher risk of failure than that done by the NIH, but also having a potentially high reward. "And the National Institutes of Health is not doing a lot of lupus research," he said.
Lupus patients now must take steroids to suppress the auto-immune response. "That's a very, very tough thing on the body," Johnson said.
Renowned University of Washington geneticist Mary-Claire King identified the BRCA1 gene, which is implicated in certain types of inherited breast cancer. Johnson said that early in her career King decided that she wanted to work on a woman's disease, and the two most prominent were breast cancer and lupus. "The reason she went to breast cancer is that's where the money is."
Johnson wants to provide scientists with financial opportunities and incentives to do research on lupus.