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The International Myeloma Foundation Works to Educate and Empower Myeloma Patients

When Brian D. Novis was diagnosed with multiple myeloma, he was just 33 years old, newly engaged, and told he would only have three to five years to live. Little was known about the cancer of the bone marrow at the time, and there was no place for patients or their families to go for support. So he created one.

The International Myeloma Foundation (IMF) was founded in 1990 by Brian Novis, his then-fiancée, and now IMF President, Susie Novis, and Brian's physician, Dr. Brian G.M. Durie. The organization's mission is to improve the quality of life of myeloma patients while working toward prevention and a cure. The four main areas of focus for the IMF are research, education, support, and advocacy.

"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 said.

Approaching its 25th anniversary, the IMF hosts a variety of events across the country and around the world to better educate and support patients. These events include two-day Patient & Family Seminars and half-day Regional Community Workshops, both of which allow patients to interact with top myeloma experts and provide attendees with the most up-to-date myeloma research. The IMF also supports more than 250 support groups nationwide, including three in Pennsylvania: the Philadelphia Multiple Myeloma Networking Group, the Northeastern PA Multiple Myeloma Support Group of Wilkes-Barre, and the Pittsburgh Myeloma Support Group.

The IMF's multilingual website is a place for patients, their families, their caregivers, and doctors around the world to find the latest studies and myeloma diagnostic and treatment guidelines issued by the IMF's research division, the International Myeloma Working Group (IMWG). The IMF also publishes many materials meant to further educate and empower, including handbooks, a weekly newsletter, a quarterly magazine, and the "Understanding" brochure series.

The world of myeloma has evolved greatly in the years since the IMF's founding. Though there is still no cure for the disease, novel therapies have improved outcomes for those who have been diagnosed, and everyone affected now has a wealth of knowledge available to them thanks to this invaluable organization. The IMF's Black Swan Research Initiative was launched in 2013 to find a pathway to a cure for myeloma. The initiative's team of international researchers will begin cure trials at the end of 2015.

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If you have questions about myeloma and its treatment, a call to the IMF InfoLine, 800-452-CURE puts you in immediate contact with an IMF Information Specialist who can provide information and support. Or you can visit the website http://www.myeloma.org or email TheIMF@myeloma.org.

The Pittsburgh Multiple Myeloma Support Group, founded October 2000, meets on the 2nd Tuesday of each month from 6:00 - 8:00 PM at Our Clubhouse, 2816 Smallman Street, Pittsburgh, PA 15222. For more information, please contact Yvonne Yaksic at 412-527-2702 or by E-mail at pittsburgh@imfsupport.org. You can also visit our website at http://pittsburgh.support.myeloma.org.



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