Davy James

A cancer diagnosis can be profoundly frightening, rattling a person straight to the very core of their existence. This situation can be even more terrifying when the diagnosis is a rare form of the disease that offers little in the way of answers.

Such was the situation Arnold Smokler found himself in back in 1994, when the retired pharmacist was diagnosed with Waldenstrom's macroglobulinemia (WM). With little information available and no support groups to find, Smokler went on to establish what would become the International Waldenstrom’s Macroglobulinemia Foundation (IWMF), a group that has evolved from just 21 people to more than 8,000 strong.

“We try to support everyone, whether they’re in Indiana or India,” says IWMF President Carl Harrington. “And that also means caregivers, families and friends as well as patients, while we advance the search for a cure.”

This rare form of B-cell lymphoma is diagnosed in only about 1,500 US patients annually. While there was once a lack of information available for patients with WM, the foundation now offers a comprehensive wealth of resources on its 

. In addition, the IWMF also provides educational programs for patients and supports research efforts for improved treatments, with the ultimate goal of finding a cure.

“We’re all tired of having this disease,” Harrington says. “The IWMF is volunteer-led and volunteer-funded. Most of our board members or their spouses have the disease. And almost all of our money comes from our membership. Because we’re an orphan disease, there aren’t many of us, and there is no federal funding. So we’re the folks who financially support our work.”

Since 1999, the ongoing fundraising efforts of the foundation have led to more than $8 million invested in research to help fight the disease.

The foundation’s comprehensive services for members include more than 55 support groups worldwide and online forums that encourage personal interactions among patients and survivors. 

“And our LIFELINE program allows patients to talk one-on-one with folks who have been there, seen that and done that,” Harrington adds.

The IWMF also sponsors an annual educational forum available to all WM patients and their caregivers. These forums include speakers who are specialists involved in varying aspects of clinical practice and research in the field of WM. This is in addition to a robust 

 on the foundation’s website and a quarterly newsletter.

“The first thing patients should do is become educated because there is a host of different treatments available,” Harrington says. “We give people a chance to explore the various options on their own, encouraging the use of second opinions from physicians and learning from people who have had similar experiences. They can then better understand the issues that they need to think about.”

“Many of us tend to hang around a while because WM is treatable, so patients go through periods of treatment, remission, relapse and treatment again. Everybody’s WM experience is a little different,” Harrington says. “Most oncologists don’t have a lot of familiarity with our disease. They may see only one or two of us in their careers. That’s another reason why it’s very important for patients to become knowledgeable. We work hard to educate patients so that they can become their own best advocates.”

Beyond educating patients, the IWMF has partnered with the Leukemia & Lymphoma Society for a program dubbed the 

, which sponsors an annual medical conference and a research program designed with a four-pronged approach to finding a cure for the disease.

All of these efforts are aimed toward the IWMF’s long-term goal to no longer be necessary.

“I hope we find a cure and close the IWMF,” Harrington says. “If not, I hope we continue making progress in terms of treatment so that remissions last longer, treatments have fewer side effects and the disease becomes more like diabetes or high blood pressure that’s controllable as long as you take your medicine. But even that isn’t really good enough. WM cells would still be in our bodies and could still run amok when treatment is stopped. And there would still be significant potential for side effects to increase over time or, even worse, for resistance to develop that renders drugs ineffective. That’s why what we really want to do it is to find a cure for WM and a way to prevent it. We’ll put ourselves out of business because no one else will ever again receive a diagnosis of Waldenstrom’s macroglobulinemia.”

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A diagnosis of Waldenstrom's macroglobulinemia can be scary, but it doesn't need to be faced alone. 

Rare Cancer Doesn't Need to Be Fought Alone

Susie Novis Durie has a specific vision for the future of the International Myeloma Foundation (IMF), a group she co-founded in 1990 after her late husband Brian Novis was initially diagnosed with multiple myeloma.

That vision is for the foundation to simply no longer exist.

“I hope that we’re a thing in a museum, because we will have cured myeloma and we will have closed our doors,” said Novis Durie, who has served as president of the IMF since 1992.

The journey that took the IMF from its initial launch through the current progress that has since been achieved fighting the disease, started with fear and confusion after Brian’s diagnosis. At the age of 33, Brian was told he had a disease he never heard of and that he only had three to five years left to live.

Despite this diagnosis, the pair went ahead with their marriage, focused on fighting his illness instead of the comparatively mundane details of planning a wedding. Joining together with hematologist Brian G.M. Durie, MD, a multiple myeloma specialist, the IMF was born with the goal of helping patients and families facing the same fight with the disease.

Brian, who previously worked as a headhunter in a search firm, turned his energy to developing the IMF during its infancy.

“He was very passionate about this. He had the worst bone disease I’ve ever seen in my life,” Novis Durie said. “He went from being almost 6 feet tall to being 5 feet 2 inches. He just collapsed. A lot of the work he did from the hospital bed in our living room. I was still working at the time and I’d say, ‘Honey, here’s your phone, here’s your pee bottle, the nurse will be here soon, so go for it.’”

Unfortunately, at the age of 37, Brian lost his fight with multiple myeloma. Despite her profound grief at her personal loss, Novis Durie knew she had to continue the work her late husband started.

“In those days, for me, I don’t know how I did it,” she said. “When he died, the foundation was run out of my house. I was literally under the covers with a box of tissues. But I thought, ‘Oh my God Susie, you have got to get your ass out of bed.’ Everything Brian did to make this happen, you can’t let it fall apart.”

From those humble beginnings with just three people on board, the IMF has swelled to become an international powerhouse in cancer advocacy. It now counts more than 450,000 members in 140 countries and has raised more than $100 million, of which 89 percent has gone to support programming and research.

“I always tell people, I don’t care if they wake up in the morning and have miso soup with Cheerios, if you have myeloma or someone you love has myeloma, we’re going to reach out and we’re going to help you, and then you’re going to reach back and help us,” Novis Durie said.

The IMF is focused on four key divisions of the organization: research, advocacy, education and patient support.

The group’s research division is called the 

, a groundbreaking project with the goal of developing the first definitive cure for myeloma.

Additionally, the IMF brought together 200 leading myeloma researchers from around the world as part of the 

, which has developed guidelines followed worldwide for the treatment of patients. The IMF also established the 

, which is comprised of nurses from leading myeloma treatment centers, to develop recommendations for the nursing care of patients with the disease.

“These nurses are the top in the country,” Novis Durie said. “They write guidelines for nurses on how to overcome side effects and the various issues these patients face to stay on treatment as long as possible to get the maximum benefit.”

Beyond the extensive work on the clinical and caregiver side, Novis Durie proudly highlights the patient education component of the IMF, for which the group was at the forefront.

“Patient education is my claim to fame. Nobody was doing patient education,” she said. “Maybe why we were so successful is that I really didn’t know what the heck I was doing. I didn’t know if that was a good idea, I just thought we can do anything.”

In addition to holding the first seminars for patients and their families, the IMF maintains a huge network of 140 myeloma support groups across the United States.

 also assists patients and caregivers with an extensive library of print and digital resources, in addition to a trained staff on their InfoLine at 1-800-452-CURE (2873).

Novis Durie looks at the progress achieved since the start of the group with pride, knowing the IMF has helped guide many patients from the darkness of that initial diagnosis.

“It’s a whole different landscape now for patients,” she said. “Right now, we’re on the brink of being able to cure a subset of patients. We have such a cornucopia of new drugs. So to them I say don’t worry. Take a breath, become empowered as much as you can, use us, call us. You’re going to be okay.”

After losing her husband to myeloma, Novis Durie continued his project, the International Myeloma Foundation, which now has more than 200,000 members in 140 countries.

Continuing Her Husband's Work: The IMF Wants to End Myeloma

“The promise is very straightforward. We give you the right to be pissed and the channel to pay it forward,” Matthew Zachary said with a defiant tinge in his voice as he describes the mission of Stupid Cancer.

As the founder and CEO of the largest advocacy group serving young adults with cancer, Zachary knows all too well the burden shouldered by patients between the ages of 15 and 39 following a cancer diagnosis.

Long before Stupid Cancer touched the lives of millions of people affected by the insidious disease, Zachary himself was just an ordinary college student focused on becoming a concert pianist and composer. His journey began with the curious loss of functionality in his left hand, which was followed by a trail of misdiagnoses that failed to answer why the gifted musician was suddenly unable to play the piano.

After his symptoms continued to worsen, Zachary’s dreams were seemingly shattered in 1995 when, at the age of 21, he received the diagnosis that would forever alter his life and the path he would follow. Zachary was told he had medulloblastoma, and he would likely not survive more than six months.

“My whole life got destroyed,” Zachary recalled. “I’m very casually saying it that way, but it was very traumatic, especially when you’re given a grim prognosis at such a young age. That was me.”

As the life Zachary had envisioned for himself became tattered and torn, he set about fighting back against cancer. However, he soon realized support networks for a 21-year-old were not only lacking, they were non-existent.

“What’s less than zero? There was nothing. It was the 1990s and there was nothing,” Zachary recalled.

Zachary found a loose network of list serves in the pre-internet days that left him feeling somewhat isolated as a young cancer patient who didn’t fit the mold of what a cancer patient was at the time.

“Everything we do is based on outcomes. Gen X and millennials have poorer outcomes than any other age group,” Zachary said. “That’s inequitable, and we’re not crying foul. We’re saying that’s OK you missed out on us because we’re only eight percent of the people who get sick. But we still matter.”

The group has since become a dominant voice for young adults and has a wide array of services and award winning programs that include academic research, support, outreach, awareness, podcasts, conferences, mobile health and social media. 

“All of these things are happening because people believe in what we stood for, the brand,” Zachary said. “People get uncomfortable when I say we’re a brand, but we are and I don’t care what you think, we’re a brand. There’s a reason you like us, there’s a reason when you hear our name you have a response, positive or negative, ideally positive.”

As the remaining remnants of Generation X enter their forties and leave young adulthood behind, Zachary and Stupid Cancer are focused on evolving to meet the needs of the generations of young adults to follow.

“The 12-year-olds today, what are they going to want? That’s what we’re looking at,” Zachary noted.

Despite the changing demographics, the group remains focused on the estimated 400,000 Americans under the age of 40 who beat cancer under the age of 13.

For those newly diagnosed with cancer, Zachary maintains a simple message that is at the heart of the mission of Stupid Cancer.

“It’s not fair and it’s OK to understand that,” he said. “But you have a right to survive with dignity and no one can take that away from you. If you don’t feel like you’re surviving with dignity, then you make a stink. We’re trying to end the phrase ‘I wish I knew you existed.’”

Davy James

Rare Cancer Doesn't Need to Be Fought Alone

Continuing Her Husband's Work: The IMF Wants to End Myeloma

Stupid Cancer Fights to Have Younger Voices Heard

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