Thursday, June 26, 2003
Leaders & Success
She's Banking On Finding Cure
Think Positive: Susie Novis is hardly a beginner anymore in battling myeloma
BY MICHAEL MINK
At A Glance
INVESTOR'S BUSINESS DAILY
Born: 1949 in Hartford, Conn.
For Susie Novis, keeping a dream
Education: Bachelor's in
alive is what keeps her going.
English and psychology from
Her husband, Brian Novis, had
Curry College in Milton,
been diagnosed with multiple
Mass, in 1972.
myeloma, a rare cancer of the
Achievements:
bone marrow, in 1988. Frustrated
Helped found the
by how little information there
International Myeloma
was on the disease, he became a
Foundation in 1992. Has
proactive patient. With the help
served as president since then.
of Dr. Brian Durie, a world
Helped the foundation
expert in myeloma, and Susie,
grow into an organization
Brian
Novis
founded
the
that raises $3 million annually
nonprofit International Myeloma
in donations for research
Foundation in 1990.
funding and patient support,
One of his first priorities for the
and that is recognized as the
foundation was to bring myeloma
leading organizational
specialists together from all over
authority on myeloma.
the world to share information on
Helped initiate the "Bank
the disease. This helped the doc-
On A Cure" project, the first
tors educate themselves, and pro-
myeloma cancer patient DNA
duced the information myeloma
bank of its kind.
patients needed so they could
make informed treatment choices.
By 1992 Brian Novis had put
all cancer deaths.
together a scientific board, creat-
The foundation raises an aver-
ed a newsletter and held the first
age of $3 million a year for
clinical conference for multiple
research funding and patient sup-
myeloma. It was also in 1992 that
port. It's won the respect of physi-
Brian, only 37, succumbed to his
cians, patients and pharmaceuti-
illness. While Susie Novis was a
cal companies as the leading
Susie Novis, whose husband died of myeloma 11 years ago, helped start
founding foundation member,
organizational
authority
on
Bank On A Cure, a DNA source with the aim of conquering all cancer.
she'd primarily been working to
myeloma.
support Brian. After his death, she
person can make a difference,
with more than 100,000 members
Novis keeps the foundation
found herself elected by the board
two people can make a miracle,' "
(50,000 of whom are patients) in
focused
on
its
mission.
of directors to be president of the
Novis, 53, said in a recent inter-
64 countries. Information for
"Everything that we do has to
foundation.
view. "I said to myself, `OK,
patients and doctors can be
have a positive impact on that
She was uncertain if she was up
you're not going to let Brian's
accessed through myeloma.org.
patient and their families," she
to the task, but found strength in
dream die with him.' "
While myeloma still represents
said. "One of the cornerstones to
the words Brian spoke when he
Under Novis' leadership, the
only 1% of cancer cases, it is
what we do at the foundation is
first talked about starting the
foundation,
based
in
North
growing at the rate of 1,000 new
education. What the IMF does is
foundation.
Hollywood, Calif., has grown
cases a day due to environmental
give patients and their families
"He would say, `Susie, one
into an international organization
factors. It accounts for 2% of
enough information so that they

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can sit down with their physician and
vivid imagination."
they didn't," Novis said. "So I thought, `Why
make treatment choices that are right
Once Novis became president of the foun-
don't we start a DNA bank?' Again, I was
for them."
dation, one of the first conferences she attend-
looking at myself as a facilitator. What I like
Under Novis, the foundation has increased
ed
was
the
International
Society
of
to do is bring people together and make
donations by an average of 12%-15% over the
Hematology, held in London. "We saw all
things happen."
last several years (with the exception being
these doctors and I went to these `meet the
The Bank On A Cure project is the first
2001, after 9-11). That's a big growth rate for
professor' sessions, and I thought, `Why can't
myeloma cancer patient DNA bank of its kind.
a charitable group.
patients do that?' " she said.
Its initial goal is to collect DNA samples from
What accounts for this growth? "I think the
Novis was told by the foundation's science
10,000 myeloma patients. While there are
key to being a good fund raiser is passion, and
and advisory board that her idea was no good ­
other DNA banks, Bank On A Cure is unique
you have to also show that you can handle the
patients who were ill wouldn't be interested in
because it openly shares information with all
money and achieve results," Novis said. "You
traveling any distance to meetings and clinical
other researchers.
have to show what you've done with the
conferences. Novis believed otherwise. From
"Look at cancer as a giant jigsaw puzzle, and
money. Our contributors (primarily patients
the first patient-family myeloma seminar, held
unless we're all going to work together on our
and their families, along with some corpora-
in Los Angeles in 1993 and attended by 65
puzzle as one, we're never going to be able to
tions) are like shareholders; they've bought
people, the foundation has gone on to hold
solve it," Novis said. "The IMF, through our
into this organization. My duty is to make sure
more than 60 meetings all over the world,
collaborative spirit, has really earned the trust
our shareholders are getting a good return on
attended by upward of 500 people.
and friendship of researchers, and so we now
their investment. And what better return can
Novis' goal is to provide all cancer patients
are working with 20 research centers around the
I provide than to give patients time and realis-
with a cure. Utilizing her scientific board, rela-
world. We've got two of the top molecular sci-
tic hope, and keep improving the quality of
tionships with the world's top myeloma and
entists in the world, Dr. Gareth J. Morgan and
their lives?"
cancer specialists, and pharmaceutical compa-
Dr. Brian Van Ness, co-chairing the project."
Novis has helped the myeloma foundation
nies, the foundation has recently launched the
Whether meeting with the best scientific
succeed and grow because of her relentless
Bank On A Cure DNA bank. The idea came
minds in the world or stuffing envelopes
efforts to continue to bring the best scientific
out of the foundation's semiannual scientific
in her office, Novis has one goal at the end of
minds in the world together. She combines her
advisers retreats.
each day.
enthusiasm and positive attitude with a disdain
"What I kept hearing from the researchers
"I need to be able to look myself in the mir-
for the word "no."
we'd bring together at our conferences was
ror and say, `You did a good job today. You
"People say, `Oh, you can't do that,' and I
that in order to move not only myeloma
helped someone. You made someone's life
say `Oh really. Well, watch us,' " Novis said.
research forward but cancer research forward,
better,' " she said. "You can never lose sight of
"I never say no. I think that we're only
they needed to have access to DNA samples
who it is that this is all about: the patients and
limited by our imaginations. And I have a very
from both patients and control groups, which
their families."
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