Susie Novis Durie founded the International Myeloma Foundation (IMF) in 1990, along with her late husband Brian Novis and hematologist Brian G.M. Durie, MD, a multiple myeloma specialist who was then practicing in England and is currently the IMF’s Chairman of the Board of Directors. Susie brings to the IMF a background as a business executive along with her personal drive, her commitment to myeloma patients and her own experience as a caregiver.
Shortly after she and Brian Novis were engaged, he was diagnosed with 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, Susie and Brian were in shock, and worst of all, they felt completely alone. At that time there was no place for myeloma patients and their families to turn 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 Durie
Despite Brian's illness, he and Susie got married, and together with Dr. Durie they formed the International Myeloma Foundation to help other patients and their families. Less than four 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.
450,000 members in 140 countries
In 1992 Susie was elected executive director of the IMF and today holds the title of President. Under her direction the IMF has grown from 3 people to 450,000 members in 140 countries around the world. The IMF has raised over $80 million, with more than 89 percent going directly to support IMF programs and myeloma research.
Many of the programs that Susie has developed have become models for other organizations worldwide. In 1992 Susie attended a medical meeting where doctors had the opportunity to meet myeloma experts, and she realized that patients, too, should be able to meet the experts. In 1993, she organized and held the first Patient and Family Seminar. No organization in any disease setting was conducting meetings of this kind. Susie changed the landscape for all patients by starting the IMF’s flagship Patient and Family Seminar program. For the first time, she brought patients together with myeloma experts, empowering patients and their families by allowing them to make informed treatment decisions. To date the IMF has held over 250 Patient and Family Seminars in 15 countries around the world. Susie has also overseen the development of multilingual patient materials as the IMF distributes more than 25,000 information packets each year in more than 20 languages.
To support research, in 2012 Susie worked with Dr. Durie to create the IMF’s Black Swan Research Initiative®, a global collaboration to cure myeloma, and in 2013 she created the Global Myeloma Action Network, another international collaboration spearheaded by the IMF, which strengthens and supports the efforts of myeloma patient advocates around the world.
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. Investor’s Business Daily featured Susie Novis Durie in its Leaders & Success column, and she has been recognized in many articles worldwide for the important work that she has done on behalf of myeloma patients and their families.
Susie was born and raised in Connecticut. She graduated from Curry College in Milton, Massachusetts 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.