In August 2024, a team of 15 individuals (including myeloma patients, care partners, and doctors) were on a quest to finish a 100-mile expedition across Iceland to raise both awareness for the disease and funding for research aimed at finding a cure.
By Sylvia Dsouza
IMF Vice President of Development
It was a true test of the human spirit. A sublime cause fueled the participants' determination and motivation throughout this grueling six-day, five-night cycling expedition through Iceland’s rough terrain while enduring harsh weather conditions.
As Icebike cycling guide Maria Ogn Gudmundsdottir aptly described: “Is it difficult? Yeah, it is a real challenge. Iceland is rough. The terrain of the gravel here in the highlands is rough. The weather here is like a dangerous animal. We have the wind, the rain, and it can beat you up. They have to hold the handlebars well, so the wind does not blow them off the road.”
Some of the patients who participated in the cycling event have severe anemia, bone and kidney damage or are actively going through chemotherapy and severely debilitating treatments. Yet, they were prepared to take on this remarkable challenge to benefit the global myeloma community.
Thomas Goode, one of the brave cyclists and a myeloma patient who was diagnosed at age 34, inspired us with his words: “Am I going to make it? I was diagnosed with cancer. And when you hear those words, ‘you have cancer,’ it is hard not to think that you are not going to perish. I was only 34 years old. They told me that the average life span of a newly diagnosed patient was only 3-5 years. I have an aggressive form of myeloma, and I’ve relapsed a few times, but I accepted it.”
Myeloma specialist Dr. Saad Usmani of Memorial Sloan Kettering Cancer Center in New York said it best: “I think many patients, when they are first diagnosed, can have damage to their bones, damage to their kidneys. The issues they develop due to bone damage cannot be overcome. Despite those challenges, if patients really push themselves and train for something like this, I mean that is the beautiful part. This is such an important testament to the human spirit.”
IMF President & CEO and 28-year myeloma patient Yelak Biru, who joined the ICE cyclists in Iceland, emphasized that the IMF needs to do more, in terms of supporting myeloma research and finding a cure for multiple myeloma.
“I was diagnosed with multiple myeloma in 1995, three months before my 26th birthday and I was told, for sure, that I will be dead before I turn 30. It will be 29 years this coming December since I was diagnosed with this incurable disease. We do not have a cure yet for multiple myeloma and we need to do more. The reason we are here in Iceland is to support the iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) initiative. Our goal is to be able to identify myeloma at the precursor condition and see if it can be screened and as a result, prevent it from progressing to multiple myeloma,” he said.
Dr. Sigurdur Kristinsson, principal investigator of the iStopMM initiative, explained the objectives and goal behind the project. “Multiple myeloma is a cancer of the bone marrow, and it originates in the plasma cells, the antibody-secreting cells of the body. When these cells turn into cancer, they can give various signs and symptoms. The interesting thing about myeloma is it is always preceded by a precursor—MGUS or monoclonal gammopathy of undetermined significance.”
“The iStopMM trial has one main goal—to evaluate the impact of screening for MGUS. This is the largest nationwide clinical trial of any cancer precursor ever performed in the world. We have screened more than 75,000 samples for MGUS, and it turns out that 5 percent of the Icelandic population has the precursor. We have seen in clinical studies performed on other cancers, like breast and cervical cancer. They did similar studies like this before, and proved that you should screen for breast, cervical, and other cancers. This has not been done in MGUS or myeloma. We are evaluating if we should screen for MGUS or not. To be able to get 54 percent of a whole nation to give informed consent to a clinical trial is totally unique and has never happened before,” he added.
And just as the iStopMM initiative is unique and noteworthy, so is the IMF Iceland Cycling Expedition. No one thought it was possible to gather a group of patients, care partners, physicians, and nurses to a country halfway across the world, to do a cycling expedition.
But the International Myeloma Foundation did—and we will proudly, tirelessly, relentlessly, and fearlessly continue to do so, until we find a cure for multiple myeloma.
I would like to take this opportunity to sincerely thank all the participants of the 2024 IMF Iceland Cycling Expedition. The IMF could not have pulled this off without your tenacity, resilience, and active participation.
You can witness the highlights of this truly remarkable and inspiring inaugural adventure in this video.
The 2025 IMF Iceland Cycling Expedition will take place between August 27 – September 2, 2025, and the International Myeloma Foundation is NOW ACCEPTING APPLICATIONS.
Deadline for submission of applications is on Thursday, November 14, 2024. Please visit myeloma.org/ice2025 to access the application form and submit.
You can also make a donation to support this remarkable journey. Your support will greatly help in advancing research to find a cure for multiple myeloma. Support a participant or donate to become part of the change.
To apply for the 2025 IMF Iceland Cycling Expedition, or to donate to this cause, visit myeloma.org/ice2025. You may also contact yours truly for more information at [email protected].
We hope you can join us on another exciting journey next year!
About Sylvia Dsouza
Sylvia Dsouza is the Vice President of Development for the International Myeloma Foundation. She is a strategic fundraiser with a diverse background, bringing more than a decade of experience in developing and implementing principal and planned gift strategies; managing principal gifts and planned giving events, meetings, and engagements while working in prestigious institutions such as RAND Corporation, Pardee RAND Graduate School, the University of Southern California (USC), and University of California, Los Angeles (UCLA). Sylvia came to the IMF with a proven track record of implementing best practices to strengthen donor engagement and expertise in building a culture of philanthropy. She earned her MPA from the University of Southern California and a BA degree in communication studies from the University of California, Los Angeles.
