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Special Edition - June 2002 Volume 4, Issue 11:
Dear Reader
By Susie Novis
President
07.30.02

This "Special Edition" of Myeloma Today is indeed special on a number of levels. What took place in Washington, D.C. the week of June 3rd was special not only for our myeloma community but also for our cancer community as a whole. The IMF, along with 40 other cancer organizations, all of whom belong to One Voice Against Cancer, (OVAC), came together as a unified force to convey one important message to Congress – to "fully fund the National Cancer Institute’s bypass budget" and other critical programs at the National Institutes Of Health and the Centers for Disease Control and Prevention.

As a single unit, we climbed Capitol Hill. We were no longer playing the body parts war, no longer saying one cancer – my cancer – is more important than another. We stayed on point and delivered our message – to significantly increase the level of funding for cancer research – period. We know that "all boats will rise with the tide."

The IMF’s lobbyist, Tom Sheridan, made an important point when he said, "If we all want a piece of the pie, than we better bake a bigger pie!" It’s everyone’s responsibility to put pressure on our legislators to fully fund the bypass budget because that will enable us to bake a huge pie!

I had been asked to represent OVAC and testify before the Senate Health and Human Services Appropriations sub-committee Chaired by Senator Tom Harkin. A huge responsibility indeed. I truly felt like Mrs. Smith goes to Washington. I agonized about what I would say, how I could best present our message, our cause. All the usual questions raced through my mind, "Was I the best choice?" "Would I be able to deliver a strong enough message?" "Would I be too nervous or too emotional, would my hands and voice betray me?" "Could I deliver in only 5 minutes?"

The morning of the hearing, I was invited to attend a coffee meeting in Senator Harkin’s office along with the delegates from Iowa and some of the other people who were to testify. It was a very heady morning, meeting the Senator, and when Secretary of HHS, Tommy Thompson, walked in, the buzz in the room increased greatly. Finally, the moment came and we were ushered into the Senate hearing room, through a back door. My first impression was that the room was very crowded and the lights were really bright. As we quickly took our seats I was glad to see familiar faces. Sitting right up front were fellow IMF Board members Mike Katz and Rich Saletan, and my step-daughter Annabel.

The first person called upon to testify was Secretary Thompson. Immediately following his testimony, I knew the moment had arrived. Our panel was asked to come forward and take their seats. I took a deep breath, said a silent prayer, and joined Dr. Huerta , Dr. Heberman, brain cancer patient Mike Bruene, and Steve Case, Chairman and CEO of AOL Time Warner, at the table.

In turn, we were each asked to present our testimony. When I finished, I felt a big surge of relief, and hoped that I was able to deliver. Then the room erupted in applause and Senator Harkin looked at me and said, “Very powerful, very powerful.”

I have to say that part of that day is still a bit of a blur. We immediately left the hearing room and headed to stops in what seemed like hundreds of congressional offices. It was an incredible day, made only more exciting by the dozens of e-mails I received from people around the country who had seen the C-SPAN coverage of the event.

I am sad to say that the recent weeks have seen the deaths of two well-known Americans from myeloma, J. Carter Brown, the former head of the National Gallery of Art in Washington, DC, and advice columnist Ann Landers.

For every step we take forward we are reminded of just how far we have yet to go. I’m asking all of you to please join this effort – together we can achieve our dream and find a cure for myeloma.


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