International Myeloma Foundation

The International Myeloma Foundation (IMF) is an American non-profit organization serving patients with myeloma, a cancer of plasma cells in the bone marrow. The IMF also provides support and information for family members, caregivers of myeloma patients, physicians and nurses. The organization is dedicated to improving the quality of life for all myeloma patients by focusing on four key areas: research, education, support, and advocacy.

Founded in 1990 by Brian Novis, Susie Novis, and Brian G.M. Durie, M.D., IMF is a 501(c)3 resource for both patients and caregivers, offering programs that include educational seminars, a patient hotline, multilingual publications, government advocacy, and a web-based Personal Information Management system for recording care and treatment.

The IMF is based in North Hollywood, California, and, according to its 2013 annual report, has a membership of 350,000 people in 140 countries.[1] Its motto is "Improving lives — Finding the cure".

History

The IMF was founded in 1990 by Brian Novis, who was diagnosed with multiple myeloma at age 33, his wife Susie Novis, and his physician Brian G.M. Durie, M.D.

Brian Novis died of myeloma in 1992, but the IMF's work continues with Susie Novis serving as President and Dr. Durie as Chair of the Board of Directors.[2]

Programs

There are approximately 22,500 new patients diagnosed with myeloma each year in the U.S.[3] The IMF offers a variety of programs to aid with educating all new patients and their caregivers.

In 1993, the IMF became the first organization to offer Patient & Family Seminars, granting patients and their caregivers access to top doctors working in the field of myeloma. These global seminars generally see one to two thousand attendees and occur multiple times throughout the year. US-based seminars have been held in Boca Raton, FL; Seattle, WA; Boston, MA; and Los Angeles, CA. Internationally-based seminars have been held in the Czech Republic, Denmark, Germany, France, Austria, Norway, Slovakia, and Italy.[1]

To address the need for similar events in smaller communities, the IMF also hosts frequent Regional Community Workshops and Myeloma Center Workshops. These half-day workshops offer families a more intimate, condensed version of the full Family & Patient Seminars at no charge. US Regional Community Workshops have been held in North Carolina, Georgia, Texas, Indiana, Arkansas, Kansas, and Wisconsin. Internationally-based seminars have been held in Germany, Italy, and the Czech Republic.[1]

The IMF produces a growing number of publications, which are regularly updated and offered free of charge both in print as well as digitally on the IMF website. The IMF library of publications provides up-to-date information on all issues affecting the myeloma community, including innovations in treatment, information on clinical trials, updates on policy issues, and more. Popular titles include the Patient Handbook, the Understanding series, the IMF’s quarterly newsletter Myeloma Today, and weekly e-newsletter Myeloma Minute. IMF also produces an InfoPack, which is made up of a selection of the IMF’s publications and is designed to provide newly diagnosed patients and their families with a complete understanding of the disease and care.[1]

The IMF worked with the Association of Cancer Online Resources (ACOR) to create a myeloma mailing list an amyloid mailing list to facilitate information exchange and support.[4] The IMF also hosts a hotline at 800-452-CURE (2873 and offers online help at www.myeloma.org.[5]

Advocacy

The IMF has an advocacy group (the Myeloma ACTION Team) that guides individuals in taking a stand about critical health issues affecting the myeloma community.[6] The IMF believes the only way anyone can make a difference is to take action. IMF works with advocates from across the country on both state and federal legislation. The Myeloma ACTION Team unites all of its advocates to build a community that fosters education, action, and empowerment. Together the Myeloma Advocates strengthen support for legislation on oral chemotherapy parity, state level grassroots networks, and nationwide myeloma awareness.

Research

The IMF is involved in a variety of research efforts, which include maintaining a myeloma gene and tissue bank project.

The IMF created the Brian D. Novis Research Grant in 1994 as part of its commitment to finding a cure for myeloma. Novis was the co-founder of IMF and in his memory, the organization promotes research of better treatments, management, prevention, and a cure. The grants are made possible through donations from private individuals and are awarded to doctors and researchers in the field of myeloma, as well as related disorders including but not limited to MGUS (monoclonal gammopathy of undetermined significance) and immunoglobulin derived amyloidosis—annually.[7]

A subsidiary is the International Myeloma Working Group (IMWG), a consortium of more than 100 myeloma researchers from around the world who collaborate on a broad range of myeloma projects. Members of the IMWG conduct research to prevent onset of myeloma, improve treatment, and find a cure.[8] The working group publishes statements and treatment guidelines in its own name[9] as well as sponsoring publications by its members. The IMWG's mission is to conduct translational research—from lab bench to patient bedside—under the auspices of the IMF and to publish consensus statements and guidelines for the management of myeloma.

The IMF also has the Black Swan Research Initiative (BSRI) in order to work towards finding a cure for myeloma.[10] BSRI is based on the latest scientific understanding of how myeloma develops in the body, the most technologically advanced methods to measure and quantify disease development in the body, and the ability to measure and quantify the response to treatments.

Fundraising

The organization holds its major fundraising event, the annual Comedy Celebration benefiting the Peter Boyle Memorial fund, in November of each year.[11] In addition, the IMF accepts individual donations and matched gifts. Membership in the Hope Society,[12] 1000 Cranes of Hope,ref.http://myeloma.org/ArticlePage.action?tabId=9&menuId=285&articleId=3263&aTab=-1,/ref>, and Flying a Virtual Kite[13] can also help the IMF.

In the United States, IMF is categorized as a 501(c) non-profit organization by the IRS.

References

  1. 1 2 3 4 http://myeloma.org//pdfs/annual_report_2013.pdf
  2. ↑ Whittington, Elizabeth. "Article - "Researchers and Advocates Make Progress in Multiple Myeloma"". CureToday.com. Retrieved 2011-01-02.
  3. ↑ http://www.ahchealthenews.com/2014/02/25/tom-brokaw-cancer-diagnosis-sheds-light-on-multiple-myeloma/. Missing or empty |title= (help)
  4. ↑ http://myeloma.org/ArticlePage.action?tabId=6&menuId=39&articleId=1252&aTab=0
  5. ↑ http://myeloma.org/ArticlePage.action?tabId=0&menuId=0&articleId=2991&aTab=-1
  6. ↑ http://actionteam.myeloma.org/about/
  7. ↑ http://myeloma.org/IndexPage.action?tabId=12&menuId=124&indexPageId=10&parentMenuItemId=124&categoryId=0
  8. ↑ "International Myeloma Working Group". International Myeloma Foundation. Retrieved 23 January 2014.
  9. ↑ "Publications". International Myeloma Working Group. Retrieved 23 January 2014.
  10. ↑ http://myeloma.org/PortalPage.action?tabId=8&menuId=366&portalPageId=18
  11. ↑ "Loraine Boyle: Fighting Myeloma with Laughter". Huffingtonpost.com. 2010-03-18. Retrieved 2011-01-02.
  12. ↑ http://myeloma.org/ArticlePage.action?tabId=9&menuId=245&articleId=3028&aTab=-1
  13. ↑ http://myeloma.org/ArticlePage.action?tabId=9&menuId=216&articleId=2741&aTab=-1

External links

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