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The IMF at 22: How Far We've Come, How Far We Still Have To Go

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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.

9 Comments

Susie,
Thank You

Hi Susie.....You are so amazing and I am so greatful that you and Brian came into our lives....I will never forget you two....wish we could get together at some point. Love you, Diane

Dear Susie,
Brian and you had help millions of people with MM and their families.
Thank you,
Nancy

I am humbled and in awe of you and your husband. If it wasn't for you, people like me wouldn't have the chances and success at a quality life that we do now. I thank you from the bottom of my heart.

Susie,

Congratulations...you have raised a beautiful "child" that has helped thousands!

Regards,

Bill

I'm completely grateful to IMF. Ten years ago I was given the news that I had MM. I've done all my research through IMF to help my ONC and myself deal with this disease and with Gods help I'm still here.

Thank you so much for all your information that you distribute freely! I was diagnosed over ten years ago, and initially did not have much access to anything MM. The prognosis then looked bleak, so I stopped reading statistics. But with the help of active research, and a bigger spotlight in the community, we are making headway!
Thanks again!
Christine

Thank you Susie. It is what you had achieved 14 years ago that helped us to try and provide a support and education service to those with Myeloma in Australia. You have been a beam of light to those diagnosed with Myeloma. All the very best from the Myeloma Foundation of Australia.

And I always tell people that the societies around MM encourage scientists to collaborate. Am I right? This virotherapy could help cancer patients beyond MM, I'm hoping. My husband just saw Dr. Abonour at IU and we know he's in your ring.

Thanks for all your constancy.

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