Michelle Seaton
08/01/2005
Daniel Case III was diagnosed with an aggressive form of brain cancer early in 2001 and told that he had six to 12 months to live. Case, a successful investment banker who specialized in seeding high-tech start-ups, decided to use his business expertise and his remaining time to put in motion a project that, he hoped, would one day find a cure for brain cancer. He and his brother Steve, the founder of America Online, pooled their resources to create Accelerate Brain Cancer Cure (ABC2). They donated $3.5 million to the Burlingame, Calif.-based organization, which has now raised a total of $12 million. While the Case family continues to be its largest donor, ABC2 has attracted financial support from more than 1,000 individuals and organizations.
In much the same way that small, entrepreneurial companies
such as AOL revolutionized business practices in the 1990s, the Case brothers
hoped to energize and change the field of brain cancer research, which attracts
little government funding and is a low priority for drug companies and
researchers. In the four years since they founded ABC2, it has granted millions
to researchers working to move promising brain cancer treatments into clinical
trials. It has fostered partnerships between otherwise competing research
facilities. It persuaded Duke University researchers to screen all cancer drugs
currently in testing by pharmaceutical companies for efficacy against brain
cancer, at no charge to the drug manufacturers themselves. This will offer those
manufacturers a cost-free method to determine which drugs hold the most promise
for treating brain cancer. The companies can then begin clinical trials. This
program has helped quadruple the number of brain cancer drugs undergoing
clinical trials; the number of such drugs in animal tests is up
fivefold.Pharmaceutical companies are not normally interested in shouldering the cost of clinical trials for experimental drugs for brain cancer because the patient population is so small. About 17,000 people are diagnosed each year. The drug companies see this as an insignificant customer base, compared with the demand they see from those afflicted with more common forms of cancer. For example, the American Cancer Society estimates that there will be 212,000 new cases of breast cancer this year, along with 232,000 cases of prostate cancer and nearly 105,000 new cases of colon cancer. ABC2’s support has made trials commercially viable for the drug companies.
| TOP VIEW People often fund medical research after they or someone they love face a serious or terminal disease. But it is difficult to have an impact that matches the passion and desire to help others in similar straits. Some hard-charging entrepreneurs have succeeded with a venture philanthropy approach, but only with an enormous investment in time and the appropriate skills and drive. Donors need to consider carefully what skills and resources they can provide. Helping an established organization improve its mission may be a better way to effect change than going it alone. |
A New Generation
Although Dan Case died in June 2002, ABC2 continues to pursue his mission with his entrepreneurial drive and style. Indeed, this combination of an ambitious vision, aggressive salesmanship and a talent for creating unlikely partnerships now marks a new generation of philanthropists in the medical field. These medical venture philanthropists are increasing in number, but they face daunting challenges that not all have overcome successfully.
ABC2 is one of at least 40 private foundations dedicated to fighting brain cancer, many of which were created in memory of a family member who succumbed to the disease. “For any family, seeing a member suffer from an illness is a life-altering event. What comes from that is a mission, a sense that something must be done,” says Hugh Magill, senior vice president at Chicago-based Northern Trust. Magill oversees the company’s charitable trust business and serves on the board of several private medical foundations. He says these families feel their mission is to fund research or to provide help and information to other families facing a similar crisis.
Unfortunately, these organizations often founder because they lack specific goals or because the people staffing the foundation lack the skills to achieve those goals. For example, a foundation set on funding research needs to make an annual request for proposals, review them and select one or more research projects to fund. If it fails to do so, money that could be seeding important research lies dormant. Also, failing to disperse the minimum amount of funds required in the tax code for charitable foundations will attract the attention of the IRS, which could eliminate a foundation’s nonprofit, tax-exempt status. “The worst is the realization that you have committed all of these resources and all of this effort, but you haven’t made any impact,” Magill says. “People give because they want to change things, and sometimes it doesn’t happen.”
Those who hope to
start a foundation similar to ABC2 or the Prostate Cancer Foundation (PCF), a
Santa Monica, Calif., organization founded by former financier Michael Milken,
need to have broad entrepreneurial skills and significant drive. Milken was
diagnosed with advanced prostate cancer in 1993; he was told it was terminal.
Within two weeks of his diagnosis, he crashed a conference on prostate cancer at
the MD Anderson Cancer Center at the University of Texas and confronted
researchers and specialists about the lack of progress and consensus on the
treatment of prostate cancer. Within the year, he founded PCF and started a
personal campaign to call on his vast network of contacts in the worlds of
medicine, politics and business to raise the profile of the disease and flood
the field with money to attract and retain the most innovative
researchers.
“When Mike Milken’s father was diagnosed with melanoma in 1974,
Mike took him around to all the major cancer centers and met their directors,”
says Geoffrey Moore, a senior advisor to Milken. “He maintained those relationships over the years and gave to those organizations through the Milken
Family Foundation. Fast forward to 1993, when he was diagnosed with cancer. It
was a shock, sure, but after he got over that shock, he knew exactly what he had
to do.”
Today PCF has an annual operating budget of $21 million and is the
largest private source of funding for prostate cancer research. PCF has lobbied
to boost government funding for research, which has increased in the past 12
years from less than $25 million to more than $500 million annually. Because of
its high-profile giving, PCF can use its largesse as both a carrot and a stick.
If researchers accept funding from the organization, they must make a yearly
pilgrimage to a retreat and share their findings with experts at competing
research facilities. Those who balk can have their grants rescinded. “Mike’s
genius is his ability to stimulate teamwork, getting people from different
institutions who used to think of themselves as competitors but don’t now,”
Moore says.
Evangelist TerriersHe Tried to explain that the field of research was competitive, like the
marketplace, and that this new center had to be an innovative start-up.
To duplicate this kind of success, the leader of a
private foundation would have to possess the contacts of a lobbyist, the
charisma of an evangelist and the tenacity of a terrier. Peter Carroll, clinical
leader of the Prostate Cancer Program at the University of California San
Francisco (UCSF) Cancer Center, points to his establishment’s long relationship
with Andrew Grove, the cofounder and chairman of Intel, who in 1995 was
diagnosed with prostate cancer.
After his treatment, Grove became involved in
a patient advocacy program at UCSF that was advising researchers about
developing a prostate cancer center. Apparently, Grove was underwhelmed by the
mission statement and research goals of the proposed center. He took Carroll
aside after one presentation and tried to explain that the field of research was
competitive, like the marketplace, and that this new center had to be an
innovative start-up. Carroll wasn’t sure what Grove meant until three days later
when he got a fax from the Intel chairman detailing a different mission
statement. At its conclusion, Grove wrote, “Be distinctive. Do things here that
no one else in the field is doing.” It was an entirely new frame of reference
for the researchers at UCSF, who had not fully considered their center’s place
in the larger research community. “We changed our focus across the board because
of that,” Carroll says.
Since then, Grove has been heavily involved in the
UCSF Cancer Center. He became chair of the organization’s national fund-raising
campaign in 2000. In 2002 he donated $5 million in matching grants to a new stem
cell research initiative. Grove also continues to participate in the patient
advocacy program, offering impromptu feedback to Carroll and his colleagues.
Through the program, former patients or relatives of former patients can call or
email the center’s director to air their complaints, to suggest new patient
services or to push for new studies that link lifestyle issues to cancer. “They
are unbelievably dedicated. I get emails from them at 10 at night, at 2 in the
morning. I take their criticisms seriously, and they’re frequently right,”
Carroll says.
Magill advises his clients to decide how much involvement they
want in an organization, even their own charitable foundation, before they
begin. Donors interested in high-impact venture philanthropy should also decide
how they will measure success. Those who throw themselves into a cause out of
grief or urgency may donate in a way that speaks more to their needs than those
of the organization. For example, giving a rare piece of medical equipment to a
hospital that has no trained staff to use it will not help any patients. By
contrast, those who begin with more conservative goals and allow their
involvement in a cause to grow with their interest in medical philanthropy can
find a more organic way to match their talents and resources with their chosen
cause.
Donors’ involvement often changes over time, as personal and
financial circumstances allow. Malin Burnham, founder of Burnham Real Estate,
started out 25 years ago as a board member of the La Jolla (Calif.) Cancer
Research Foundation. He ended up having the organization renamed after him.
“When I joined the board, I didn’t know what I was getting into. I wasn’t
thinking that far ahead. I just knew that this jewel of an organization was
unknown, and I thought I could help,” Burnham recalls. He became what he refers
to as head cheerleader for the scientists at the cancer center. He gave money,
found donors and did what he did in his business—forge beneficial
relationships.
| For any family, seeing a member suffer from an illness is a life-altering event. What comes from that is a mission, a sense that something must be done. |
“We are a conservative family. We do not like to hang our names on buildings,” says Burnham, who explains that the center was given a polite ultimatum by another major donor who insisted on remaining anonymous. That donor would match Burnham’s gift only on the condition that the institute be renamed after the Burnham family. The board agreed and, after some thought, so did Burnham.
“I have the satisfaction that by helping to build this organization with my mental abilities and financially, by bringing in other donors and other resources, I’ve helped the researchers accelerate their discoveries. There are seven or eight new drugs in the marketplace. If that can save lives or improve the quality of life for people who have these diseases, then it’s an untold satisfaction for me,” he adds. “I can’t measure it, but it’s certainly there.”
Michelle Seaton is a senior correspondent for Worth. mdseaton@rcn.com.
Illustration by Maria Rendon.
Additional Information:
Charity Begins Abroad.