Charity’s Push for Quicker Cures Adds New Dimension to Philanthropy
to Nobel Prize winners and oth-
er scientists,” says Katie Hood,
chief executive officer of the Mi-
chael J. Fox Foundation for Par-
kinson’s Research, in New York.
“But there may be more to find-
ing a cure than dealing with a
scientist or two. FasterCures
recognizes that broadening the
spectrum means getting all the
players involved in trying to
find answers.”
The group also has worked
to create ways to evaluate the
effectiveness of medical chari-
ties, and to help connect fund-
ing to worthy projects. Its lead-
ers travel to conferences run by
venture capitalists to explain
the state of research and how
more money would help, Ms.
Anderson says. So far, the group
has worked with 150 donors, ad-
visers, and wealth managers.
Continued from Page 21
FasterCures also provides
advocacy: Ms. Anderson frequently testifies on Capitol Hill
in favor of increasing the budgets of the National Institutes
of Health and the U.S. Food
and Drug Administration. More
money would speed up reviews
of drugs and discoveries in basic
research that can lead to treatments and cures, she says. (See
article on Page 21.)
Model Methods
In promoting greater collaboration between nonprofit groups
and companies, FasterCures
has advised organizations, for
example, about the best way
to pool their resources to start
“biobanks”—archives of patients’ DNA and other biological
research material—and to support speedier clinical trials.
“They take effective models
and spread the word, sharing
information and helping other
organizations understand how
the model works, why it’s suc-
cessful, and how they might be
adapted for different purposes
and goals,” says Robert Beall,
president of the Cystic Fibrosis
Foundation, in Bethesda, Md.
By doing so, FasterCures am-
plifies the work of groups that
have taken risks and been suc-
cessful, he says.
International Education Group Announces Plans to Close
By Debra E. Blum and
Maria Di Mento
The Academy for Educational
Development, a nearly 50-year-
old group in Washington whose
financial problems are forcing it
to close, is seeking a single buyer to which it can transfer its
programs and employees.
Gregory R. Niblett, who has
served as president and chief
executive officer of the group
since January, said that many
for-profit and nonprofit organizations are interested in acquiring the group’s assets, which include contracts with the U.S.
Agency for International Development worth hundreds of millions of dollars.
The move comes in the wake
of a decision in December by
USAID to cut off new contracts
to the charity after the agency’s
inspector general accused the
group of financial mismanage-
ment.
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Selling Assets
Mr. Niblett said the academy
is assessing the value of its assets and will accept bids from
potential buyers—he declined
to name any interested par-ties—in the next few months.
He expects the transfer to occur
by the end of June.
In addition to the contracts,
grants, and cooperative agreements to run its many programs, Mr. Niblett said the
group’s assets include its employees (as many as 2,700 people in the United States and
abroad) and such items as the
furniture and computers in its
offices. Bidders could also offer
to take over the academy’s office
leases.
Money from the sale would
be put into an escrow account,
Mr. Niblett said, and used “to
wind down affairs, close the organization, and pay off any liabilities.” Any excess funds, he
said, would be transferred to a
nonprofit group to be spent for
charitable purposes.
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Celebrating 75 Years
Continuing Support
Mr. Niblett said the sale will
have to be approved by all the
organizations that finance the
academy, including the federal
government, which he expects
will endorse the move. One private foundation has already
decided to pull its support for
an academy-run program and
will move the project and grant
to another organization, Mr.
Niblett noted, though he declined to name the foundation
or the project.
He said that either he or a
senior manager has personally contacted 62 private grant
makers to ask them to continue
their individual relationships
with the academy at least until the sale is completed. At that
point, he said, each grant maker
will have to decide whether
it wants to transfer or end its
grants.
In December, USAID cut off
new contracts to the academy
when the inspector general’s office of the federal agency found
evidence of what it characterized as “corporate misconduct,
mismanagement, and a lack of
internal controls” within the
nonprofit organization. At the
time, the academy said it was
taking steps to improve oversight of its programs, which
then included 65 contracts with
USAID worth about $640-mil-
lion.
A month before the USAID’s
announcement, Stephen F.
Moseley, the academy’s president and chief executive since
1987, announced his retirement.
George M. Ingram, a senior vice
president, was appointed the
interim chief, and he stepped
down early this year, with Mr.
Niblett assuming the top position.
In a statement released this
month, Edward W. “Peter” Rus-
sell, chairman of the academy’s
board, said the group “has been
through a period of extensive
organizational improvements,
which ensure that the acquir-
ing entity receives solid, high-
quality programs and portfo-
lios.”
The statement also says that
the academy “continues to be
financially solvent and stable”
and that “the choice to move
all of AED’s staff and programs
together will allow AED’s pro-
grams to continue their excel-
lent record of performance un-
interrupted.”
Risk and Safety
The way in which FasterCures has expanded the focus
on donors—including people
who may never have made donations to medical causes as well
as others who tend to limit their
giving to programs supporting
one disease or one researcher—
adds a new dimension to medical philanthropy, some observers says.
FasterCures’ work has yet to
yield a new lifesaving drug or
therapy. But its efforts might
ultimately prove to be a boon
for organizations fighting a variety of deadly diseases, says
Ms. Anderson. She points to the
successful nationwide mobilization of politicians and researchers, spurred on by activists, to
find treatments for HIV/AIDS
as an example of how far collaboration, energy, and passion can
push science.
But others say that science
can only be moved so far so fast.
“It’s legitimate to say we can’t
wait seven years for a poten-
tially lifesaving drug to go from
animal trials to the pharmacy,”
says Arthur Caplan, director of
the Center for Bioethics at the
University of Pennsylvania,
in Philadelphia. “On the other
hand, we keep hearing about all
these drugs, like Vioxx, being
recalled because they’re harm-
ful. These are drugs that were
approved by regulators, but we
end up needing to be protected
from them. We want to speed
up the pendulum of the pace of
research—until someone in a
study dies. As a society, we have
a split personality on this.”
But FasterCures’ advocacy
work may lead to more needed
research money, he adds. Cur-
rently, the National Institutes
of Health budget is $30-billion
per year. “We spend trillions
on health care in the mean-
time,” he says. “It seems out of
whack.”
For organizations that repre-
sent the 25 million Americans
with one of the 7,000 known
diseases that are considered
rare—each of which has fewer
than 200,000 people who are
diagnosed each year—Faster-
Cures offers a glimmer of hope.
Mr. Sommer, one of 2,000 peo-
ple across the nation diagnosed
with chordoma, says that the
sharing of information among
competitive companies is now
being discussed—a strong sign
that FasterCures’ methods are
working.
“Getting people in a room and
on the same page can have a tipping effect,” he says. “In a few
years, we might see favorable
outcomes, like development of
new drugs, because those people were encouraged to meet.”
