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Winter 1999 Volume 3, Issue 7:
Dear Reader - Winter 1999/2000
By Susie Novis
A message from IMF president Susie Novis
12.01.99
Dear Reader,

ItÕs been a good year for the myeloma community and the future looks brighter.

IMFers throughout the nation took the time to educate their members of Congress on the urgency of more myeloma research. And it mattered. I believe that based on Congress's action and the past record of the National Cancer Institute, we will see positive developments sooner rather than later.

All this began a little more than a year ago when 300 IMFers participated in ÒThe March: Coming Together to Conquer CancerÓ together with hundreds of thousands of cancer advocates. We called for more federally funded cancer research. But ÒThe MarchÓ also raised our awareness about our roles as myeloma advocates. We realized that the only way we can help the cause of all cancer research is to articulate our myeloma experiences with policy makers.

Since then, the IMF has worked with a number of individuals to increase cancer research funding and focus a fair share toward myeloma. The personal contacts that made this year a success followed one another like a planned series of dominos falling on cue. I'd like to tell you about some of those dominos.

First and foremost, I need to thank all the IMFers who attended ÒThe MarchÓ and visited with their senators and representatives to tell their stories. I will never forget sitting in with Senator Mikulski's legislative aide and fifteen IMFers from Maryland. It set the tone for the serious work ahead. Listening to their stories taught me the power of telling our experiences. If we expect others to pay attention to our myeloma needs, we have to be willing to share them. We found that when we did that, people listened and genuinely wanted to assist us if possible.

There were others like Paul Hoffman (CA) who taught us how to ask the right questions. George & Judy Goldman, Jerry McClain, Liz Luby, and Lee Canfield took the time to meet with Rep. John Porter (IL) and his staff to educate them about myeloma and the need for more funding.

Hundreds and hundreds of IMFers like Marty Pollack (NJ), Marilyn Hornstein (PA), Cynthia Weglicki (MD), Don Woodward and Norma Holmes (VA), Jeanne Petkun (OH), Matt Cavanaugh (TX), Gerry Difford (CO), Bill and Cathy Morgan (AK), Tom Blakney (WA), and Brian Labadie (CA) made a difference by telling their stories. Those cumulative voices taught Congress lessons about myeloma that they could not ignore.

When we needed guidance within the process, we were blessed with the assistance of Rick Alvarado (FL), a former Washington DC corporate vice president for governmental affairs. Rick's daughter, Susan Alvarado, an influential lobbyist, helped set up meetings for the IMF with key congressional offices.

Numerous staffers in Congress advised and assisted us throughout the process. Rather than list them all, I just want you to know that members of Congress and their staff are also affected by myeloma through personal experiences. When we told our stories to them, many of them became our advocates.

As president of the IMF, this process has been satisfying as a participant and observer. Those of you familiar with the history of the IMF know that it was borne out of Brian Novis's frustration in trying to find out about multiple myeloma. The advocacy work of the IMF channels those feelings into positive action that will benefit myeloma patients everywhere.

Susie Novis, President


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