On October 3rd, at the Lymphoma & Myeloma 2002 clinical conference in New York City, Dr. Rubin Niesvizky presented me with an award in recognition of the work that I have done on behalf of myeloma patients and their families. I was 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.
My co-recipient was Kathy Giusti of the MMRF whose efforts have greatly increased the level of myeloma research being performed. I met Kathy in June 1996 when she and her family, like so many others in need of information, attended an IMF Patient & Family Seminar. After meeting her I thought, “This woman is a dynamo!” and I guess I was right.
Unlike the clinicians in attendance at this conference, who set out to spend their lives working in myeloma, this terrible disease just happened to find its way into my life when my fiancé Brian Novis was diagnosed in 1988. 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 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 are about people helping people. Over the years, the IMF family has grown to over 100,000 members in 64 countries 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.
From the very beginning, the IMF’s goals have been education, support, and research but our focus is always on the patient. For the past 12 years, we’ve had one mission in mind — to improve the lives of myeloma patients today, because no-one knows what tomorrow brings.
Knowledge is power — the IMF has sent out over 150,000 free information packages and has developed programs to ensure that patients are empowered by the information they need to make intelligent decisions about what’s right for them. As evidenced at this conference, there are a lot of treatment options. Education is the cornerstone of the IMF — many of the programs we’ve developed have become models both inside and outside of the myeloma community and thousands of patients and family members have attended the more than 50 IMF Patient & Family Seminars held around the world. Since many of the myeloma experts who have participated at IMF seminars presented at this clinical conference, I took the opportunity to thank them for donating their time and talent to help the IMF help others.
I also thanked the researchers for working so hard to try to put an end to cancer and the pain and suffering it causes. I thanked the clinicians for doing their very best to help the patients, knowing that they don’t have that magic bullet to cure them, but using all they have in their toolbox to give them quality of life and the precious gift of time.
I’ve worked hard — it’s a labor of love — but what I do is easy compared to the people who really deserve this award: the patients. So I accepted it on their behalf, in recognition of the courage, grace, dignity, and humor they display in their fight against this terrible disease, and on behalf of the thousands of friends that 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, two can make a miracle.”