UChicago Medicine launches Miller Family Center for Rare Blood Cancers thanks to philanthropic gift

Photo courtesy of Mark and Maureen Miller

A first-of-its-kind center for rare blood cancers has launched at the University of Chicago Medicine, thanks to a gift from philanthropists Mark and Maureen Miller.

For the couple and their family, the gift is personal: A routine blood test two years ago revealed that Mark Miller’s white blood cell count was elevated. Soon after, doctors diagnosed him with chronic myeloid leukemia, or CML.

Miller, a Colorado-based businessman with an illustrious career in companies related to medicine, began reaching out to experts and researching the disease.

“I spent a great deal of time thinking about the implications on my life,” he said. “What I learned was that even though it was a rare cancer, luckily for me, there were treatment options.”

Miller turned to UChicago Medicine hematologist/oncologist Michael Drazer, MD, PhD, who ultimately guided his care journey. During this time, he and Miller spoke about the understudied and underfunded field of rare blood cancers.

Drazer shared his vision to lead a collaborative team that could focus on research and new therapies for these diseases — and to establish a hub for sharing data globally (a data commons) and multidisciplinary approach to support research across institutions.

Miller was intrigued by the idea. “This kind of program can accelerate collective learning across the globe, which can lead to better outcomes for patients and their families,” he said.

Video Transcript

In November of 2023, I was diagnosed with a rare form of blood cancer called CML, chronic myeloid leukemia. The diagnosis of CML shapes your experiences. You take a different look at life. You cherish and relish every day. A friend of mine recommended Dr. Michael Drazer at the University of Chicago. The Miller Family Center for Rare Blood Cancers is the first of its kind in the world. The vision for the center is really to design better models of these diseases in the, in the laboratory. What this technology in our laboratory allows us to do is we can actually make models that have the same DNA as our patients, they have the same genetic changes as our patients. So instead of thinking about what might work in a mouse, we can think about what might happen in my as our patients. So instead of thinking about what might work in a mouse, we can think about what might happen in my patient? If we can build better models after learning about these patients in the clinic, then we can rapidly move closer to a treatment for these patients. You know, if we only have a handful of these patients per year that we encounter, and we know that other places in the country only have a handful of patients, we have to do everything that we can to combine our data, to share our data, and to work with our colleagues in the field no matter where they are. So one of the most amazing success stories is pediatric oncology. And if patients showed up in 1950 with a form of leukemia, there was no treatment and no cure. And what people really realized early on in the '60s and '70s is that the only way to combat these diseases was to collect data at scale from all over the country. That same disease that killed 100% of kids in 1950 is now curable 95% of the time because we've been able to collect data and study these rare diseases. When I heard about the work that Dr. Drazer was doing with rare forms of leukemia, it got me so excited because now we can do the same thing with these types of rare diseases in adults. The Miller Family Center for Rare Blood Cancers is a way to really harness different ideas and pull people together to think about a common disease or set of diseases and to think very creatively, very broadly, and bring together expertise that will help solve the problems that patients with these disorders face. For some of these rare types of cancer where we only see a couple of cases at each hospital, we now have thousands of cases in the Commons. Any researcher, anybody in the world can come to the Commons, see the data that are there, and then they can request the data for research. And it's really important that we have repeatable and understandable governance mechanisms so people understand how they can request data and what they're allowed to do with it. I hope the Miller Family Center for Rare Blood Cancers will truly embrace the collaboration for the good of the patients in the same way that I am living now due to discovery breakthroughs of researchers in the past.

Investing in lives

On the path to remission, Miller felt compelled to help. The Miller Family Center for Rare Blood Cancers, which began its work in July, builds on UChicago’s history in the study and treatment of CML.

In 1973, UChicago doctor and pioneering geneticist Janet Rowley, MD, discovered the genetic abnormality that causes CML. Rowley’s discovery paved the way for the creation of targeted therapies, and it marked the first time a particular chromosomal abnormality was tied to a single kind of cancer.

“Philanthropy is critical for research on rare diseases,” Miller said. “As I learned more about CML, I realized that patients like me are really dependent on unique research discoveries, which most likely come from academic institutions.”

The Millers’ gift includes support to create a rare blood cancer data commons, which will be developed by a team led by Samuel Volchenboum, MD, PhD, MS, a Professor of Pediatrics and Associate Chief Research Informatics Officer for the Biological Sciences Division. Volchenboum is the creator of the Data for the Common Good, a unified platform for research data, which has successfully launched multiple international data commons across many disease areas.

With a career focused on data-sharing, Volchenboum has seen the power of institutions working together to understand rare diseases.

“If patients showed up in 1950 with a form of leukemia, they were uniformly sent home to die,” he said. “There was no treatment and no cure. What people really realized early on is that the only way to combat these diseases was to collect data at scale from all over the country.”

Thanks to shared data and research, the same blood cancer that killed every pediatric patient in 1950 is now curable around 95% of the time.

Driving research forward

The Miller Center harnesses knowledge across UChicago Medicine’s Hyde Park campus, with more than a dozen experts contributing to its mission.

Drazer, the center’s director and an Assistant Professor of Medicine, said one major goal is to expand the diagnostic capacity of what physicians currently can do for patients — and do it more quickly.

“Essentially, there’s always a 10- to 15-year gap between what we can do in the actual research laboratory at the cutting edge and what we can do in the clinic,” Drazer said. “We all want projects that have the most potential for eventually helping patients.”

Sonali Smith, MD, UChicago Medicine Chief of the Section of Hematology and Oncology, said she’s confident in Drazer’s ability to drive the center’s research forward.

“The University of Chicago has constantly been involved with discovery and trying to study some of the hardest questions and the hardest diseases,” Smith said. “Dr. Drazer is a very meticulous, scientifically-driven person who will use this support to his fullest ability. I’m excited to see the center’s progress and better understand what makes these diseases tick.”

Mark Miller and his family hope the center’s efforts will greatly expand knowledge in the field of rare blood cancers, narrowing gaps in research and care.

“I pray that patients who unfortunately have a rare blood cancer have a better chance of living a longer life from future discoveries, in the same way that I am living now,” Miller said.

Michael Drazer, MD, PhD

Michael Drazer, MD, PhD, is a hematologist/oncologist and geneticist specializing in the care of people with blood disorders, blood cancers, hereditary blood disorders, and hereditary cancer syndromes. He runs one of the only clinics in the world focused on the care of people with hereditary blood cancer syndromes.

See Dr. Drazer's profile

Sonali M. Smith, MD

Sonali M. Smith, MD, is an expert in lymphoma care and research and is the Chief of the Section of Hematology/Oncology. Dr. Smith is actively researching new treatments for lymphoma, such as immunotherapies that harness the body's immune system to fight cancer.

Learn more about Dr. Smith

Samuel Volchenboum, MD, PhD, MS

Samuel L. Volchenboum, MD, PhD, MS, is an expert in pediatric cancers and blood disorders. He has a special interest in treating children with neuroblastoma, a tumor of the sympathetic nervous system.

Learn more about Dr. Volchenboum