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I met Mike Katz in 1993, when he came to the first ever Patient & Family Seminar. He walked over and introduced himself to me and told me that he and my late husband Brian Novis had spoken on the phone. I was so surprised and touched that this man took the time to fly all the way to Los Angeles to tell me about that conversation. I didn't realize that he, too, had myeloma because he was young, handsome and looked just great. We became great friends.

Mike Katz was many things: hero, friend, IMF board member, opera enthusiast, family man, lover of roller coasters, possessor of a great sense of humor, intolerant of BS, and champion extraordinaire for myeloma patients. Mike was laid to rest on Monday after waging a 25-year battle against myeloma.

SusieMike.pngFrom the moment I met Mike, my life changed--as did that of patients all over the world. Mike was a force to be reckoned with, and it was always best to be on the side he fought for. He quickly realized the value of having patients communicate with one another, share experiences, share information, and share their fears, so they could overcome them. Then they could share hope, too. Mike was also a computer geek who built the IMF website, developed our database and provided a key portal for patients and caregivers to access information and support. He did everything and more for the IMF and the entire myeloma community, patients first and foremost, but he also worked closely with doctors and nurses. In other words there was no area that was off limits to Mike, and we all benefited from his passion and his tenacity.

A survivor of both multiple myeloma and rectal cancer, Mike showed us all how to live with life-threatening illness. "I've always chosen to live my life as if I didn't have cancer," he once said. "I just face forward and try to do everything I want to do, working around symptoms and treatment side effects." For 25 years, Mike worked as a patient advocate across a broad spectrum of cancers, serving as Chair of the Patient Representatives Committee at the Eastern Cooperative Oncology Group (ECOG), Chair of the NCI's Director's Consumer Liaison Group, a Patient Consultant for the U.S. Food and Drug Administration (FDA), and on the Association of Cancer Online Resources (ACOR).

He very passionately advocated to lower the standard dose of dexamethasone, which at that time was 40 mg for four consecutive days--a high dose of dexamethasone that today, thankfully, no patient has to endure. Mike worked with the chair of the ECOG Myeloma Committee and proposed the idea of a head-to-head trial of standard dose and low-dose dexamethasone. To no one's surprise, the patients on low-dose dexamethasone did much better and didn't have to endure the horrible side effects. And many a marriage was saved!

Mike was also the principal driver behind design and implementation of the comprehensive Myeloma Manager Personal Care Assistant application in 2008. This application is designed to help myeloma patients and caregivers manage their care, and can be downloaded free of charge on the IMF website.

At major cancer conferences around the world, Mike recorded video interviews with leading physicians, which were posted on the IMF website and other social media outlets for patients to view directly.

Mike also helped establish a link between bisphosphonates and osteonecrosis of the jaw (ONJ), and he helped change National Cancer Institute (NCI) policies regarding institutional review boards that removed serious delays in initiating clinical trials.

In 2014, the American Society of Clinical Oncology (ASCO) recognized Mike with the 2014 Partners in Progress Award for his exceptional achievements, outstanding work, and dedication as a myeloma advocate. "Working with the IMF and others to help patients and caregivers and to advance myeloma research is an important and an incredibly rewarding part of my life. I am grateful to the community and to ASCO for this very special honor," Mike said at the time.

It is we who are grateful to have known Mike and to have been the beneficiaries of his wisdom, support, keen mind, problem-solving skills, honesty, and sharp wit. Mike loved to laugh and we had many laughs over the years as we traveled the world together. He was my dear, dear friend and I just can't imagine life without him.

Our hearts go out to his wonderful wife, Susie, their three sons Jason, Jeffrey and Jonathan, and their families, which now include many grandchildren.

Mike, we miss you, we love you and will remember you always.

Susie Novis
International Myeloma Foundation


A lawn chair, an old coffee table, an IBM typewriter, a ream of paper, and three people with very different backgrounds: that was the checklist of assets and experience that the International Myeloma Foundation had when it was born 22 years ago. Every day, no matter our triumphs or tragedies, I usually have a moment reflecting on where we began.

Comparing the IMF of today to the time of our founding, it is remarkable to me how far we've come...and how far we still have to go. Think of the maturing process of a young 22-year-old; how far he or she has developed since birth and yet still unsure of what the future will hold. That is how I feel about the IMF.

Like an infant, in our early days we were happy to have achieved something, anything. Following Brian Novis's diagnosis of myeloma, we had little idea of what lay ahead of us and lived day-to-day, thankful for every good one and knowing that they would become fewer sooner rather than later. Brian immediately understood that the main thing missing was information: information that patients could use and, sadly, information that most doctors and researchers didn't have.

As the idea of the IMF began to gel, we had few goals but great ambition. The first important achievement was the organization of the first international conference of myeloma experts. This meeting of 40 experts sharing ideas has evolved into a biannual international conference attracting thousands of clinicians and researchers. Additionally, since that time, the topic of myeloma has gone from being a peripheral concern at the annual meeting of the American Society of Hematology (ASH) to a highly anticipated forum and megaphone about the advances in myeloma treatment and research for thousands of doctors and researchers, and hundreds of thousands of patients and caregivers from every part of the globe.

The IMF seized on this opportunity to form a board of Scientific Advisors who, in 2001, met to publish the first ever management guidelines for myeloma. As many long-time IMFers well know, this initiative led to the creation of the International Myeloma Working Group (IMWG). This collection of internationally recognized experts is now the source of guidance and information for all with an interest in myeloma. We have now hosted three annual meetings of the IMWG, which has produced numerous management guidelines covering every facet of myeloma treatment.

Because of the achievements, clinicians have immediate, timely access to the best, most recent information to provide patients everywhere the best care possible. But that doesn't mean everyone has access to ideas yet.

The central idea that grew out of those early days was the value and importance of patient education. After attending that first clinical conference I began asking, "Why don't we have these kinds of gatherings for patients?" It had never happened before, so initially there wasn't much interest. But we persevered and held the first ever--for any disease group anywhere--Patient & Family Seminar in 1993. Since that time we have held hundreds of patient education meetings all around the world. This year alone we have hosted or co-hosted more than 45 patient meetings in 17 nations.

Also in 1993, we produced our first info packs, arguably the best information available for myeloma patients everywhere. In the early days we were busy at the copy machine churning out as many as we could afford. Today we produce more than 100 patient education booklets in at least 30 languages that are free to anyone who asks.

Looking back, we never could have imagined in 1990 the scope and range of programs that the IMF was capable of producing:

  • A Hotline that takes thousands of calls per year, professionally staffed, and for most who call, the first optimistic words they hear about their myeloma diagnosis.
  • An advocacy program that voices the concerns and needs of myeloma patients to policymakers.
  • Research grants given to the best young and experienced minds in the field of myeloma.

In 22 years, the IMF is a mature, ever-growing organization that constantly seeks the input and direction from our members so, if there is a need, we do all we can to address it.

Over the years, I have been struck by the common hopes and fears of myeloma patients and caregivers everywhere. We all have simple, yet invaluable desires: to see our children graduate from school, to hold our grandchildren, to celebrate that important anniversary with our loved ones, to laugh with our friends, to hold hands on a peaceful walk in the woods. And in the simplicity of these desires, you experience what the core mission of the IMF is. We are here to serve every individual who has been touched by myeloma.

Thanks to advances in medicine and the treatment, especially within the past 14 years, myeloma patients are living significantly longer with a vastly improved quality of life. We can envision a day when myeloma will become a chronic disease, something that Brian could never conceive.

In 2002, I was honored to testify before the U.S. Senate on behalf of all cancer patients to advocate for funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI). I described to the senators a situation that is far too familiar to too many of us: "Brian's doctor said he had three to five years to live. Our family and friends hoped and prayed that he was wrong, that we would be able to raise a family and have a long and happy life together. We were wrong--the doctor was right. Brian died in 1992, just four years after his diagnosis at the age of 37. Our life together, however brief, was happy. And even though we never had children we did create a family. Our family became the International Myeloma Foundation. A family comprised of patients, family members, caregivers, and friends."

Much like a parent who nervously, but confidently, anticipates a productive life for their 22-year-old child, I am confident, not nervous, that as our 22-year-old idea continues to mature we will make significant contributions with our core mission and programs.

Looking back on the past 22 years, I realize that together we have created so much more than a family. We have helped create a loving and caring community. A community of hundreds and thousands that can trace its birth to a lawn chair, a coffee table, an IBM typewriter, a ream of paper, and three people with very different backgrounds.

IMF President's Year in Review

This October, the IMF will be celebrating our 22nd "birthday," and I am so proud of all that we have accomplished for myeloma patients, caregivers, and healthcare professionals. This past year alone has been one of incredible achievement for us, for which we are truly grateful. 

The IMF's fiscal year runs between October 1st and September 30th, which means that we are coming up on the end of the 2011/2012 fiscal year in a matter of days. As I look back over the past 12 months, it is amazing to see how many lives we touched through our programs in Research, Education, Support, and Advocacy. 

I've put together some interesting facts about the last 12 months at the IMF that I would like to share with you now. 

This past year, the IMF held: 
  • 4 Patient & Family Seminars and 10 Myeloma Center Workshops and Regional Community Workshops reaching more than 2200 patients and caregivers nationwide
  • 5 Teleconferences on topics ranging from emerging therapies to chronic and acute pain for more than 1800 patients
  • 2 Clinical Symposia, reaching nearly 1300 physicians and nurses
  • 2 Major Research Meetings, during which the future of myeloma research was discussed by the top myeloma investigators in the world

We also:
  • Added more than 30 titles to the growing library of informative publications we offer in multiple languages
  • Updated the content of our publications, and began a major redesign project to improve the overall readability of our booklets
  • Mailed 20,000 info packs to newly diagnosed patients, caregivers, and healthcare centers around the world
  • Answered more than 4,000 calls and emails to our toll-free Hotline (800-452-CURE)
  • Visited 95% of the 115 US myeloma Support Groups and held our 13th Annual Support Group Leader Summit
  • Restructured the IMF's weekly e-newsletter, "Myeloma Minute" to better serve the myeloma community with up-to-the-minute news on multiple myeloma
  • Successfully advocated for the FDA approval of new drugs for use in myeloma patients, and the passage of oral chemotherapy parity bills in 6 states!

In addition to our core programs and services, the International Myeloma Foundation introduced a number of new programs this year, including: 
  • The International Myeloma Working Group Conference Series - Held in conjunction with the 3rd Annual International Myeloma Working Group Summit in Amsterdam, the debate between two American doctors vs. two European doctors was live webcast and open to the public for the very first time.
  • The Myeloma Post - the very first myeloma app for the iPad 
  • IMWG Myeloma Master Class - An intensive educational course designed for clinicians who are specializing in myeloma

And that's only a snapshot of what the IMF accomplished this past year! We have big plans for 2013, and we could not have done it without the support of our donors. From the $25 tribute to the $50,000 sponsorship - the IMF relies on the generosity of others to make these things happen.