We are international

The Text of Susie Novis' Acceptance Speech After Receiving the Joseph Michaeli Award

I would like to thank you all for presenting me with this award in recognition of the work that I have done on behalf of myeloma patients and their families. I am particularly gratified to receive an award named for Dr. Joseph Michaeli, a very talented and dedicated man who made helping myeloma patients his life's work.

I would also like to congratulate my co award recipient, Kathy Giusti. Her efforts have greatly increased the level of myeloma research being done and that's fantastic. I remember the first time I met Kathy it was in June 1996 in Miami Beach. She and her family, like so many other patients in need of information, were attending an IMF Patient & Family Seminar. After meeting her I thought, "Boy this woman is a dynamo!" And I guess I was right.

I have to say that it feels strange for me to be standing here by myself accepting this award, because the IMF has never been about one person. Unlike many of you here tonight who set out to spend your life working in myeloma, myeloma just happened to find its way into my life. In 1988, my fiancé, Brian Novis, was diagnosed with this terrible disease. He was just 33 years old. 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."

Like everyone who hears the words multiple myeloma for the first time, we were in shock. We were faced with a disease we had never heard of, we didn't know anyone else who had it, and worst of all we felt completely alone. Fourteen years ago, there was no place for myeloma patients and their families to turn to for help. Brian was determined to change that and in 1989 during a visit to England to see Dr. Brian Durie, the idea for the IMF was born. In 1990, we opened the door to a foundation that would forever change the lives of myeloma patients and their families.

From the very beginning, the IMF was a grassroots organization. We began operations with a lawn chair, a borrowed typewriter and a phone. The next two years were incredible. We organized our first Gala fundraiser to raise money for research, honoring Donnel Thomas for his work in bone marrow transplantation. Soon after, we started the toll-free hotline, began publication of our newsletter, Myeloma Today, and—from Brian's hospital bed in our living room—organized the first ever Clinical Conference for Myeloma which was held in June 1992 in Phoenix Arizona. Sadly, Brian died the following month, July 1992, but his dream didn't die. And even though we never had children we did create a family—the International Myeloma Foundation.

Over the years, our family has grown as patients and caregivers have stepped forward to look beyond their own battle with myeloma to help others. Special people like June Brazil, Lee Grayson, Sharon Rudolf, Leta Garvet, Elliot Bernstein, Michael Katz, Gary Takata, Cathy Lebkeucher, Peter Tischler, Michael Touhy, the list goes on and on. The IMF is about people helping people.

From the very beginning, the IMF's goals have been education, support and research. But our focus is always on the patient, and for the past 12 years all of the programs we’ve developed have one mission in mind—to improve the lives of myeloma patients. Everything we do must have a positive impact on improving patients’ lives today. Because today is the day we're living, and we know only too well that no one knows what tomorrow can bring—good or bad.

Over the years the IMF has grown, and we now have over 100,000 members in 64 countries around the world. Our headquarters is located in Los Angeles, and we have an office in the UK. We've fostered the creation of support groups, and today we work with over 85 support groups around the world.

Knowledge is power, and with that in mind, the IMF has developed programs to ensure that patients are empowered to have the information they need so they can sit down with their family and their physician and make intelligent decisions about what's right for them. As evidenced here, there are a lot of treatment options. Education is the cornerstone of the programs we've developed and many of our programs have become models for others, both inside and outside of the myeloma community. We've been conducting Patient & Family Seminars since 1993, and to date we've held over 50 seminars around the world. When I first came up with this idea some people were skeptical, but I guess they were wrong, because the thousands of patients and family members who have attended our seminars have had the fantastic opportunity to learn firsthand from myeloma experts. The list of experts who have participated at our seminars reads like a "who's who" in myeloma. Many of them are presenting at this meeting. I'd like to take this opportunity to thank them on behalf of our members for donating their time and talent to help the IMF help others.

Another important facet of our educational programs are the wide variety of informational materials that the IMF publishes for both patients and physicians. We send out these pamphlets and brochures to people in need, and they are also available on our web site. Our family is international, and we're especially proud that we can offer our materials in 12 different languages besides English, including Spanish, German, Italian, French, Japanese, Turkish, Chinese, Russian and Portuguese to name a few.

In 1993, we began sending out free information packages, and today we send out over 1,000 per month, a staggering total of over 150,000 since 1993.

Our website, established in 1995, is a key information resource for the myeloma community. Newly-diagnosed patients can search for "myeloma" on any of the major search engines and find the IMF, which is their link to quality information and their connection to fellow patients to whom they can look for support.

In 1994 we gave out our first research grant. In fact Ken Anderson was there and presented it to Atsushi Otgata who was working in his lab at the time. Since then the IMF has funded research in 42 labs around the world. We also recognize the importance of making it possible for young investigators to attend important meetings like the International Myeloma Workshops. So each year we offer travel grants so doctors who might otherwise not have the funding to travel can participate in these important meetings.

We’ve been very busy and have worked hard, and we know that we have made a difference for myeloma patients. It's a labor of love.

I would also like to thank the researchers who are working so hard to try to find the magic bullet that will put an end to cancer and the pain and suffering it causes. Besides the patients, the real heroes are you clinicians because every day you go to work and meet your patients. You let them into your life, and you do your very best to help them, knowing all the while that you don't have that magic bullet you need to cure them, but you use what you do have in your tool box to give them quality of life and the precious gift of time. I'm married to a doctor so I know what a personal toll this takes on you, but I also know how dedicated and passionate you are. And I applaud you because you are heroes too.

Mort, thank you again for recognizing me; but quite frankly I'm embarrassed to receive this award because what I do is easy compared to the people who really deserve this award—the patients. So I'll accept it on their behalf, in recognition of the courage, grace, dignity and humor they display in their fight against this terrible disease. This is for the thousands of friends I've made and lost, who enriched my life and made me believe Brian Novis was right when he said "one person can make a difference but two can make a miracle."

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