Imf bookletv6

Investing in a Cure

Breakthroughs in myeloma research Turning the corner in the fight against myeloma

Dear Friend, This has truly been an inspiring year in myeloma research.

With the launch of the IMF’s Black Swan Research Initiative™ (BSRI®) last March, we have progressed to the point of identifying a potential cure for the first subset of myeloma patients – and that’s just the beginning.

As word of BSRI spreads through the international medical community, we are more confident than ever that further progress toward a cure will be achieved in a matter of years, not decades.

With BSRI, we are forging a direct path to cure with the Black Swan Research Initiative – a bold new approach to a curing myeloma led by a multinational consortium of the top myeloma researchers in the world. In October, I had the distinct pleasure of joining our BSRI research team as they gathered for a meeting to share research, brainstorm ideas, and identify next steps on our journey to cure myeloma.

As I listened to their presentations and the high-energy exchanges that followed, I was struck by the significance of the journey that has brought me to this moment. My late husband Brian Novis was diagnosed with myeloma 25 years ago – and today, the best myeloma doctors in the world are discussing a cure with a level of confidence that is bringing hope to thousands upon thousands of families who continue to battle myeloma today.

I have realized that this amazing and critically important project is really a natural extension of the values our organization has prized since Day One: collaboration, out-of-the-box thinking, a global vision and, of course, the needs of myeloma patients.

Your past support helped fund not only our critical research programs like BSRI, but also our ongoing programs in education, support, and advocacy. These programs make a tremendous difference for patients living with myeloma.

Today, I am asking for your support. Can you join us in saving lives by funding the first definitive cure for multiple myeloma? Will you support our efforts to keep families together longer, and bring an end to myeloma forever? The IMF is here because of people like you, who know that through our combined efforts we will undoubtedly find a cure. The top experts in the world say we can win the fight against myeloma. But we can’t win without you.

The door to a cure is open - let’s walk through it together.

Thank you,

When the top myeloma experts in the world say, “We think we can find a cure, can you help?”

How can you say no?

Since the day I received my diagnosis, my focus has been on making sure I could beat it. Myeloma turns lives upside down, not just for the patient, but also for the people who love and care for us.

So, when the IMF told me about the Black Swan Research Initiative, my wife and I decided it was worth a significant investment to find the cure each one of us hopes for.

I absolutely believe the cure for myeloma is finally within reach.

I have dedicated my career to finding breakthrough treatments for multiple myeloma. We believe we are close.

With advanced understanding of myeloma at the molecular level, we have developed tests so sensitive that we can find one myeloma cell in a million. Our goal is to accurately measure minimal residual disease and define its absence –MRD-Zero™—as a cure.

The aggressive timeline for BSRI research has us ahead of schedule. Our team will begin implementing clinical trials to test multiple approaches to achieve MRD-Zero in early 2014.

It’s never been done in myeloma before and truly defines a cure.

Andrew Kuzneski Diagnosed MGUS 2007 The IMF has already done so much for me and my family. From top-notch educational seminars and workshops, to round-the-clock access to vital information on the IMF website, we have learned to value the resources made available for families like ours.

I’ve been a supporter of IMF programs since I attended my first Patient & Family Seminar in 2010. But when I learned how the Black Swan Research Initiative had resulted in a potential cure for my type of myeloma, I knew we had to step it up.

No other organization has made us feel like part of the family like the IMF. What they have accomplished in only 23 years will pale in comparison to what we can all accomplish together in a few short years with the Black Swan Research Initiative.

Setting the Stage to Beat Myeloma In 2013, the IMF launched the Black Swan Research Initiative. The black swan symbolizes anything that demands a fresh perspective to imagine—such as a cure for myeloma.

Westerners once thought all swans were white. Only when they ventured into uncharted Australia did they encounter black swans, shattering their preconceived notions.

Together, we will shatter preconceived notions about this fatal disease and unlock the pathway to Cure.

But the fight against myeloma doesn’t only take place in the battlefield of research. For more than two decades, we have been leading the charge to improve lives through programs in education, support, and advocacy.

Every program we offer plays a role in our mission – to improve the quality of life of myeloma patients while working toward prevention and a cure. In the war against myeloma, information and support are your most effective weapons in a patient’s arsenal. From in-person seminars and workshops, to virtual teleconferences and webinars, to our toll-free Hotline staffed by compassionate information specialists – the IMF is your greatest ally.

Why We Fight Multiple myeloma is the 2nd most common blood cancer, affecting over 100,000 families worldwide. An estimated 22,000 new cases will be diagnosed in 2014, yet it is a disease that very few people hear about until they or somebody they love has been affected.

When IMF Co-Founder Brian D. Novis was diagnosed with myeloma in 1990, his determination to fight the disease inspired the beginnings of the International Myeloma Foundation – now the oldest and largest myeloma-specific charity in the world. Today, the IMF stands as the most valuable resource for patients, family members, and the medical community.

We fight for families to ensure their best possible quality of life until a cure is found, and so that no patient ever feels that he or she stands alone against myeloma.

“Believe me, knowledge is both power and hope.

Honestly, being around when they find a cure is high on my list of priorities.” - Jim Miller, Myeloma Patient and IMF Supporter The IMF was co-founded by the three people most affected by myeloma – a patient, a caregiver, and a myeloma doctor. With these three unique perspectives bound together by a common goal, the IMF serves as resource for all people affected by multiple myeloma. Patients, caregivers and healthcare professionals alike benefit from the Education, Research, Support, and Advocacy programs that are funded through the support of our members.

2014 promises to be a very active year for the IMF. Along with our core programs such as the Patient & Family Seminars, Toll-Free Hotline, Support Groups, and library of publications, the coming year will be a defining one for myeloma research.

Your support is critical in setting the pace for 2014. Our breakthroughs in research have already positioned us to cure 15-20% of all myeloma patients within the next decade – but that is only the beginning. The driving force behind IMF research like BSRI is to follow multiple avenues to cure simultaneously.

The answer to how many of these projects can be implemented at once is up to you.

Today, we are asking for your support. We are asking you to step up for the 20,000 patients who will hear the word “myeloma” for the first time in 2014. We are asking you to invest in the groundbreaking research that is going to lead to functional cures for myeloma patients in our lifetime. We are asking for your help in making 2014 the year we win a major battle against multiple myeloma.

2013 By the Numbers Whether your priority is funding the research that will lead to cure, or ensuring that 20,000 newly diagnosed patients in 2014 have access to the latest information and support – every dollar you spend at the IMF helps improve lives while working toward a cure.

$500

Pays for 5 Flow Cytometry tests to identify Minimal Residual Disease as part of the BSRI clinical trials to begin in 2014

$1000

Pays for a DNA test to identify Minimal Residual Disease as part of the BSRI clinical trials to begin in 2014

$2000

Provides scholarships for 34 low-income patients and family members to attend a Patient & Family Seminar in 2014

$4500

Maintains the IMF Website as a resource for updated information about myeloma for 27,500 visitors each week

$750

Covers the postage for 250 Info Packs delivered to newly diagnosed patients in the United States

$1500

Pays for an imaging test to identify Minimal Residual Disease as part of the BSRI clinical trials to begin in 2014

$2500

Educates cancer center technicians on how to measure Minimal Residual Disease with Flow Cytometry testing

$5000

Sponsors an in-person BSRI Investigators meeting to identify next steps for ongoing research projects

The International Myeloma Foundation has been awarded our 10th consecutive 4-star rating from CharityNavigator.com for fiscal responsibility. We are committed to honoring your support by ensuring that at least 85% of every dollar is spent directly on our programs and services.

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