International Myeloma Foundation
RESEARCH EDUCATION SUPPORT ADVOCACY
Serving the myeloma community for nearly 20 years!
SUSIE NOVIS
President and Co-founder
Susie Novis founded the International Myeloma Foundation (IMF) in 1990, along with her late husband Brian
Novis, and hematologist Brian G.M. Durie, M.D., a multiple myeloma specialist who was then practicing in
England. Susie brings to the IMF a background as a business executive along with her personal drive and
commitment to myeloma patients based on her own experience:
Shortly after she and Brian Novis were engaged, he was diagnosed with the myeloma.
Brian received his diagnosis over the phone. His doctor called him at work and said, "You
have multiple myeloma." Brian said, "What's that?" The doctor replied "It's a cancer of the
bone marrow, you have 3 to 5 years to live, stop by my office on your way home." He was
just 33 years old.
Like everyone who hears the words multiple myeloma for the first time, they were in shock
and, worst of all, they felt completely alone. At the time there was no place for myeloma
patients and their families to turn to for help or support. Susie remembers that when she
should have been picking out china and a wedding dress, she was searching for medical
information for her fiancé.
"We wanted to help prevent future myeloma patients and their families from experiencing the
same sense of isolation we had to struggle with." Susie Novis
Despite Brian's il ness, he and Susie got married, and together with Dr. Durie they formed the International
Myeloma Foundation to help other patients and their families. Just four short years after his diagnosis, Brian Novis
succumbed to the disease; he was 37 years old. Susie was devastated, of course, but she and Dr. Durie agreed
to continue the work of the Foundation, the work Brian Novis had begun.
185,000 members in 113 countries
In 1992 Susie was elected executive director of the IMF and became its first president, a title she stil holds today.
Under her direction the IMF has grown from three people to 185,000 members in 113 countries around the world.
The IMF has raised over $40 million, with more than 86% going directly to support IMF programs and myeloma
research.
Susie started the IMF's flagship Patient & Family Seminars program in 1993 to bring
experts and information directly to people affected by myeloma. To date, the IMF
has held over 100 of these seminars in 13 countries around the world. Susie has
also overseen the development of multi-lingual patient materials; the IMF distributes
more than 25,000 information packets each year in more than 13 languages
To support research, in 2003 she conceived of Bank On A Cure®, the first-ever
myeloma specific DNA data bank, and she developed the IMF Scientific Advisory
Board Retreat to bring the world's myeloma experts together to engage in focused
scientific discussions.
Susie has testified before Congress, urging greater resources for myeloma research,
and each year she logs more than 100,000 miles to personally help bring information
and inspiration to patients and families in need. Susie is the recipient of the Joseph
Michaeli Award and the Baylor-Charles A. Sammons Cancer Center Award for her
outstanding contributions to the understanding and treatment of myeloma.
Susie was born and raised in Connecticut, and currently resides in Los Angeles.
Susie and Brian Durie found friendship, support and guidance working side-by-side, and in 1994 they were
married.
The IMF can be reached at (800) 452-CURE www.myeloma.org.

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