As an assistant professor at Sanford Burnham Prebys and director of the Neuro-Oncology Molecular Tumor Board at Rady Children’s Hospital, Lukas Chavez, PhD, leverages modern technology for precision diagnostics and for uncovering new treatment options for the most aggressive childhood brain cancers.
We spoke to Chavez about his work and asked him how modern technology—particularly cloud computing—is shifting the approach to cancer research.
How are you using new technologies to advance your research?
New technologies are helping us generate a huge amount of data as well as many new types of data. All this new information at our disposal has created a pressing need for tools to make sense of it and maximize their benefits. That’s where computational biology and bioinformatics come into play. The childhood brain cancers I work on are very rare, which has historically made it difficult to study large numbers of cases and identify patterns.
Now, data for thousands of cases can be stored in the cloud. By creating data analysis tools, we can reveal insights that we would never have seen otherwise. For example, we’ve developed tools that can use patient data in the cloud to categorize brain cancers into subtypes we’ve never identified before, and we’re learning that there are many more types of brain tumors than we’ve previously understood. We’re basically transforming the classic histo-pathological approach that people have studied for decades by looking at tumor tissues under the microscope and turning that into data science.
How is cloud computing improving cancer research in general?
Assembling big datasets delays everything, so I believe the main idea of cloud computing is really to store data in the cloud, then bring the computational tools to the data, not the other way around.
My team did one study where we assembled publicly available data, and basically downloaded everything locally. The data assembly process alone took at least two to three years because of all the data access agreements and legal offices that were involved.
And that is the burden that cloud computing infrastructures remove. All of this personalized cancer data can be centrally stored in the cloud, which makes it available to more researchers while keeping it secure to protect patient privacy. Researchers can get access without downloading the data, so they are not responsible for data protection anymore. It’s both faster and more secure to just bring your tools to the data.
Are there any risks we need to be aware of?
Like any new technology, we need to be clear about how we use it. The technology is another tool in the toolbox of patient care. It will never entirely replace physicians and researchers, but it can complement and assist them.
Also, because we use costly and sophisticated tools that are being built and trained on very specific patient groups, we need to be careful that these tools are not only helping wealthier segments of society. Ideally, these tools will be expanded worldwide to help everybody affected by cancer.
Institute News
Brain cancer researcher Jia Zack Shen wins 2022 Eric Dudl scholarship
For the first time since the pandemic, Sanford Burnham Prebys presented the Eric Dudl Endowed Scholarship Award in person at last week’s Cancer Center Open House. This year’s recipient, selected by leaders at the Cancer Center, was Jia Zack Shen, PhD, a staff scientist in the lab of Charles Spruck, PhD The award pays tribute to Eric Dudl, a postdoctoral researcher who succumbed to cancer in 2006, when he was just 33.
“Eric was ill at such a young age, but he was also very lucky because he knew exactly what his dream job was and what his life meant,” says Shen. “Eric’s compassion and dedication to cancer research has been inspiring and encouraging for our postdocs here at Sanford Burnham Prebys. Thank you to the Dudl family for helping me continue my career here.”
Honoring Eric Dudl
In 2005, Eric Dudl had just begun his postdoctoral research in a cancer lab at Sanford Burnham Prebys, where he was known as kind, helpful and a fast learner. Then, at age 32, he was diagnosed with non-small cell lung cancer. This only fueled his fiery passion for cancer research.
“Even when he was very ill, Eric wanted to make a contribution in the time he had,” says Jim Dudl, MD, Eric’s father. “One day I looked at Eric and asked, ‘Why don’t you take some time off work? Get your energy back and go back in when you feel better?’ He looked up at me and said, ‘Why would I do that? This is the best job in the world!’”
Tragically, Eric Dudl would pass away in 2006, at age 33. The next year, his parents established the Eric Dudl Endowed Scholarship Fund to support young cancer researchers like their son. “These talented scientists pick up where Eric had to leave off,” says Barbara Dudl, Eric’s mother.
Eric Dudl
“We are so grateful to the Institute for their compassion for Eric during his illness and helping us create this scholarship. The scientists who are now working on new discoveries might one day save the life of someone like Eric.”
The award presentation was emceed by Cosimo Commisso, PhD, and featured comments from Eric’s parents, as well as his brother, Bret.
“This scholarship fund is the best way we can honor Eric, because he was so passionate about education and supporting others,” says Bret. “The fact that he now helps other postdocs further their work to fight cancer is exactly what he would have wanted.”
Meet the recipient: Jia Zack Shen
Shen started at the Institute as a postdoctoral researcher in 2016, winning a Fishman Fund Award that year. He has since transitioned to a permanent role as a staff scientist, and the funding from this award will help continue to support his role.
“Sanford Burnham Prebys has a great, noncompetitive atmosphere, and the resources we have here are excellent,” says Shen. “Combining cancer research with the drug discovery capabilities we have at SBP is my dream.”
Shen’s research focuses on killing cancer stem cells by shutting off their ability to self-renew and by promoting a response from the immune system, delivering what Shen and his colleagues call a “one-two punch.” Shen has been working specifically on glioblastoma, one of the most aggressive brain cancers.
“Glioblastoma is one of the most devastating diseases, and there is a desperate need for better ways to treat it,” says Shen. “I am working hard to leverage the immune system to fight glioblastoma and save thousands of lives.”
Institute News
2022 Fishman Fund Awards honor postdoctoral researchers
Since 2001, the awards have paid tribute to our Institute’s heritage and supported the trailblazers of tomorrow
Last week, the Fishman Fund Awards were presented at the Sanford Consortium, marking the first in-person awards presentation for the scholarships since 2019. The Fishman Fund honors the legacy of the Institute’s founders, Dr. William and Mrs. Lillian Fishman, and its purpose is to support the next generation of scientific leaders.
“The Fishman Fund Awards are important to our community and to the future of science,” said President and CEO David Brenner, M.D., during his comments at the ceremony. “The Fishmans understood that supporting our young scientists is a critical investment in the future of research, and that postdocs are the lifeblood of a scientific enterprise and crucial to the process of discovery.”
Professor Hudson Freeze, PhD, the first Fishman Fund awardee, recalled how the award was given to faculty the first year, but after that became an award exclusively for postdoctoral researchers. “Those are the people who do the work, and without them, there is no Institute,” said Freeze.
Assistant Professor Caroline Kumsta, PhD, who was a Fishman Fund awardee in 2011, also spoke. “The Fishman Fund has shaped many aspects of my life, and I am honored to be one of the recipients,” she said.
The evening was emceed by Reena Horowitz, who established the Fishman Fund with the late Mary Bradley in 2001. Since then, 74 awards have been conferred. This year, three $10,000 awards were given to postdocs to support their career development. An additional fellowship that provides salary and benefits was also awarded.
“These awards are important because they provide the vital funds to young career scientists for professional development and collaborative opportunities,” Horowitz said. “It is these up-and-coming biomedical researchers who will make the medical discoveries of tomorrow, shape the future of healthcare and literally save lives.”
This year’s awards were presented to:
Guillem Lambies Barjau, PhD Jeanne Jones and Kathryn Fishback Fishman Fund Award
“I am honored to be here today. Thank you to Sanford Burnham Prebys and the Fishman Fund for giving me this opportunity.”
Lambies Barjau hopes to improve the outcome of patients with pancreatic cancer. In the lab of Cosimo Commisso, PhD, Lambies Barjau studies how pancreatic cancer cells gather nutrients from their environment to survive and grow. Pancreatic tumors exist in a harsh, nutrient-poor environment, but they can activate a process called macropinocytosis to scavenge molecules as an alternative source of energy. By deciphering this process, Lambies Barjau’s research may reveal novel approaches to slow the growth of these often-deadly tumors.
Shanshan Yin, PhD Lenka Finci and Erna Viterbi Fishman Fund Award
“I am grateful that you are our scientists’ strongest supporters. Together, we’ll do great science.”
Yin is studying the links between aging and breast cancer. About one in eight women will get breast cancer during her life, and the risk increases with age. In the lab of Peter Adams, PhD, Yin uses cutting-edge technology to quantify the activation of specific genes during aging. Identifying these genes may help explain why breast cancer occurs more frequently in older women, and could also lead to preventive treatments to spare the millions affected by the disease.
Tanja Eisemann, PhD Reena Horowitz and Mary Bradley Fishman Fund Award
“I can’t tell you how honored I am to receive a 2022 Fishman Fund Award. I would like to express my deepest gratitude to the Fishman Fund donors for their generosity.”
Eisemann is exploring approaches to leverage the immune system against medulloblastoma, one of the most aggressive childhood brain cancers. Although rare, there are still about 500 children in the U.S. diagnosed each year with this dangerous cancer. In the lab of Robert Wechsler-Reya, PhD, Eisemann studies the interactions between T cells and medulloblastoma tumor cells, opening new research avenues to discover therapies that can enhance a patient’s own immune system to slow—or even eliminate—this dangerous brain cancer.
Cynthia Lebeaupin, PhD Fishman Fund Fellowship
“The Fishman Fund Fellowship and the resources at Sanford Burnham Prebys will ensure I canperform science of excellent quality and make a lasting impact. Thank you for your support.”
Lebeaupin works in the laboratory of Randal J. Kaufman, PhD, where she studies how fatty liver disease leads to liver cancer. Fatty liver disease, which affects more than 25% of the U.S. population, develops when the body creates too much fat or can’t metabolize fat efficiently enough. There are no treatments or cures for this chronic liver condition and no methods of early detection. Lebeaupin’s research aims to address this unmet medical need by uncovering the biological pathways that lead to liver cancer and translating these findings into effective therapies.
Institute News
How community collaboration shapes leukemia research at Sanford Burnham Prebys
But it all started with their son Luke. He had a very rare subtype of acute myeloid leukemia, one of the most difficult-to-treat cancers, and, sadly, he passed away from the disease in 2016. This inspired the Johnsons to become involved with fundraising and advocacy for cancer research.
“Our foundation started with a fundraising golf tournament to honor Luke, and that was about taking something so horrific and so horrible and finding a way to turn it into something positive,” says Rena. “If you can take that tragedy and put a positive spin on it, then everything around Luke and his name and his memory becomes positive.”
How “the stars and planets aligned” to bring the Johnsons to the Institute
In a remarkable coincidence, the Johnsons discovered on their first visit to the Institute that Deshpande’s research focuses on AF10 fusion AML, an extremely rare subtype of the disease that accounts for about 5 percent of cases. It’s also the subtype of AML that Luke had.
“It was a goosebumps-raising moment,” says Todd. “Once we visited Ani and saw his lab, we realized there was a lot more in common with our story and his research than we had realized before.”
“The stars and planets aligned and brought us to Ani,” adds Rena.
Luke Tatsu Johnson
As well as helping fund Deshpande’s research through LTJF and their partnership with the Rally! Foundation, the Johnsons are also on the Community Advisory Board (CAB) for the Institute’s Cancer Center, which advocates for cancer research by engaging the community.
“The CAB does such a wonderful job of connecting the community with the scientists, and we’re so excited to be involved in that,” says Todd. “That’s fundamentally what we do as a foundation—we support the folks doing this work so that children and families down the road can have a different outcome from Luke’s.”
AML research “needs more support and needs more funding”
The Johnsons’ support helped the AML research team discover a new potential treatment for AML, which is currently in preclinical studies, after which they hope it will advance to clinical trials. The research team maintains that it would have been impossible to secure the NIH grants necessary to do these studies without the jump start given by the LTJF and the Rally! Foundation.
“We couldn’t do what we do without the Johnsons’ support,” says Deshpande. “We are so grateful to have them in our corner, and we’re confident that our work will help improve outcomes for kids like Luke down the line.”
Despite this progress, more research into AML and other leukemias is still needed. Leukemia is the most common cancer in children and teens. About 4,000 children are diagnosed with leukemia each year, and AML accounts for about a third of these cases.
Studying AML from all angles
To tackle this pressing problem, the Institute has established an AML disease team composed of researchers across labs and clinician partners. The team’s research falls into several large categories, including studying the genetics of AML, studying how the disease works in animal models and working to develop drugs that can target specific mutations associated with the disease, which are numerous.
“AML has many different subtypes, so it’s been difficult for researchers to make major advances to treat all cases of AML,” says Deshpande, who co-leads the AML team with Professor Peter D. Adams, PhD “Most patients with AML are given the same treatments that have been used since the ’70s, which is why we want to look at AML from as many angles as possible.”
In addition to being difficult to treat, it is also challenging to get funding for AML research, particularly for the rarer subtypes. This makes the support of foundations such as LTJF even more vital to researchers like Deshpande.
“This is exactly why AML research needs more support and needs more funding, because this is a much more difficult disease than other forms of leukemia,” says Todd. “Many patients don’t have positive outcomes, and the only way to turn that pendulum is to intensify our efforts and increase the amount of research being done.”
Institute News
Heating up cold brain tumors: An emerging approach to medulloblastoma
Immunotherapy has revolutionized cancer treatment, but it doesn’t work on many childhood brain tumors. Researchers from Sanford Burnham Prebys are working to change that.
Brain tumors account for about a quarter of all cancer cases in children. Medulloblastoma, a particularly aggressive form of childhood brain cancer, often develops resistance to radiation and chemotherapy. Researchers from Sanford Burnham Prebys are working to solve this problem by harnessing the power of the immune system.
They describe the potential of this approach in their recently published paper in Genes & Development.
“The brain’s location makes it very difficult to target medulloblastoma tumors with current therapies,” says first author Tanja Eisemann, PhD, a postdoctoral associate in the lab of Robert Wechsler-Reya, PhD “They’re also immunologically cold, which means they’re good at evading the immune system.”
The researchers hypothesize that it may be possible to enhance the body’s immune response to medulloblastoma and help the body’s immune cells enter the brain, making treatment with immunotherapy possible.
“Immunotherapy has so much potential as a cancer treatment, but its scope is limited right now,” says Eisemann. “We want to bring the benefits of this therapy to medulloblastoma patients and their families.”
Eisemann has been studying this approach in mice, and although the research is still at an early stage, she and her colleagues are highly optimistic about its potential.
“The brain has long been considered immune privileged, hidden from immune-system surveillance and immune responses. But we’re starting to see that this isn’t the case,” says Eisemann. “This is a rapidly evolving field, and I’m excited to be working in a lab on the forefront of that research.”
Institute News
Fishman Fund Fellowship awarded to Cynthia Lebeaupin for liver cancer research
Cynthia Lebeaupin, PhD was recently awarded the 2022 Fishman Fund Fellowship, a postdoctoral award unique to Sanford Burnham Prebys.
The award provides a boosted stipend to exceptional postdocs from the Institute who have a demonstrated research track record and whose work shows significant potential for future breakthroughs.
“It’s an honor to have been selected for such a prestigious award from the Institute, says Lebeaupin, who works in the lab of Randal J. Kaufman, PhD “The resources and people at Sanford Burnham Prebys are incredible and I’m happy to be able to continue my research here.”
Sanford Burnham Prebys introduced the Fishman Fund Awards in 2001 to honor of the Institute’s founders, Dr. William and Lillian Fishman. The fund was established by Reena Horowitz and the late Mary Bradley, longtime supporters of the Institute.
“The Fishmans created an Institute that fosters a collaborative, inspirational atmosphere for postdoc students,” said Horowitz at the 2021 Fishman Fund Awards. “The Fishmans understood that support for new science is a brilliant research investment.”
Lebeaupin has been at the Institute since 2018, and this is not her first honor from the Fishman Fund. In 2021, she was awarded a Fishman Fund Career Development Award, a smaller prize offered to several postdocs each year. She also completed an internship at the Institute’s former Lake Nona campus in 2014.
“I’ve had an affinity for Sanford Burnham Prebys for a long time,” says Lebeaupin. “I knew once I met Dr. Kaufman and everybody on campus that this was the best place to complete my postdoc.”
Lebeaupin’s research focuses on a growing and pressing problem in medicine – liver cancer. One of the major risk factors for developing liver cancer is fat accumulation in the liver, known as fatty liver disease. Increases in obesity rates over the last several decades have led to a dramatic increase in fatty liver disease.
Fatty liver disease is increasing at an alarming rate, and unfortunately, it’s here to stay,” says Lebeaupin. “My research is figuring out how fatty liver disease progresses to liver cancer, so we can use this knowledge to help prevent it.”
In particular, Lebeaupin is working on exploring how cells respond to fatty liver disease over time. She discovered that a molecule that helps liver cells protect themselves from short-term stress can promote cancer in the long-term. She has now moved into studying the system in human tissues.
“This research is exciting because we aim to translate our discoveries from the bench to the bedside,” says Lebeaupin. “What I hope to do in the future is use new technologies on liver samples from patients so we can identify what’s actually going on in liver diseases.”
Institute News
Facing cancer disparities head-on: An interview with Svasti Haricharan
Svasti Haricharan, PhD, and her lab are revealing why more Black women get breast cancer, and they’re also telling us what we can do about it.
Svasti Haricharan, PhD, an assistant professor at Sanford Burnham Prebys, is tackling one of the most pernicious problems facing cancer researchers today—why some people, particularly disenfranchised groups such as Black women, get cancer more frequently and more severely than others. For years, the answer has been explained away by differences in lifestyle or socioeconomic status, but Haricharan’s research, published in Therapeutic Advances in Medical Oncology, is demonstrating that the real answer is much more complicated.
What were your findings? We found differences between the breast cells of white and Black women that help explain why Black women experience higher mortality from ER+ breast cancer. These included differences in the expression of specific genes and consistent molecular differences in the cellular signals controlling how fast cells can grow. These differences were present in both healthy and cancerous cells.
Why is it important to study breast cancer disparities? Black and white women have about the same incidence of ER+ breast cancer, but Black women are 42% more likely to die from it. This is just one example of the type of glaring health disparity we see in Black people and other marginalized communities. Unfortunately, these issues have been severely neglected by the research community. Or worse still, they are attributed entirely to lifestyle factors, which often shift the blame to the patients themselves.
What do your findings mean for women with breast cancer? The immediate implication is that we can act on this information to improve diagnostics and treatment for Black women with breast cancer. Our results suggest that at least some Black women could benefit from being treated earlier with CDK inhibitors, which are drugs we already have and understand. In the bigger picture, we’re showing that there are internal factors at play in health disparities that develop based on people’s lived experiences. We’re going to have to really dive in and explore these factors if we want to make any real progress in precision medicine. Everybody deserves care that is tailored to their molecular makeup as closely as possible.
What are some of the challenges still facing researchers working on health disparities? The simplest answer is getting the money to do the research. We’re fortunate that we’ve found something here that’s quickly actionable, but it’s not always going to work out like that. This isn’t about just a few more studies. The types of differences we’ve found here are likely present in other types of cancer and in other groups. The more we look, the more we’re going to find. Funders and researchers alike need to be willing to prioritize this type of research going forward, or we’ll never see real change.
Institute News
Padres Pedal the Cause 2022: Team Sanford Burnham Prebys raises more than $21,000 for cancer research
Each year a team from Sanford Burnham Prebys hits the pavement as part of Padres Pedal the Cause, an annual event that invites participants to cycle, spin, run or walk to support local cancer research. This year’s team was small but mighty, raising more than $21,000 to fund collaborative cancer research projects in the San Diego area.
Including the money raised by the Sanford Burnham Prebys team, Padres Pedal the Cause has raised more than $2.8 million this year so far. These funds will be distributed as grants to support collaborations between six participating research organizations: the Salk Institute, Scripps Research, Rady Children’s Hospital, UC San Diego, the La Jolla Institute, as well as Sanford Burnham Prebys.
“This is more than just a fundraising event; it’s also a chance to connect with the cancer community and reflect on the importance of teamwork in cancer research,” says rider Ze’ev Ronai, PhD, director of the Institute’s NCI-designated Cancer Center. “I’ve done the race for four years, and every year it makes me proud to be on team Sanford Burnham Prebys.”
Besides Ronai, notable Institute names on the team this year included Thomas Chung, PhD, director of Translational Programs Outreach at the Conrad Prebys Center for Chemical Genomics; and Scott Tocher, general counsel and vice president of Communications. In addition to the riders, event volunteers from Sanford Burnham Prebys included Michaela Andrews, Araceli Ambert, Mariela Castanares, David Scott, Susan Goho and Katherine Kling.
“We don’t have a huge team, but we always have a great one,” says team captain Adrienne Crown, JD, director of Administration at the Cancer Center and director of Compliance and Operations for the Institute, “I’m so proud that just a few people are able to help make such a big impact.”
The top fundraiser on this year’s team was not an employee of the Institute but is still very much a friend of Sanford Burnham Prebys. Kim McKewon is a longtime donor to the Institute and has been participating in Padres Pedal the Cause since its inception in 2013. This year she raised more than $6,000; and to date, she has raised more than $30,000. In her website bio, she writes that she pedals for her husband, Ray, who is in remission from leukemia.
“Kim is one of the superstars of our team, and we are so thrilled that she was able to ride with us again this year,” adds James Short, Crown’s co-captain and director of Digital Design at the Institute.
And although the event itself is over, the ride is not. The deadline for fundraising is May 9, and 100% of every dollar raised goes toward lifesaving cancer research. Help team Sanford Burnham Prebys create a world without cancer.
Researchers from Sanford Burnham Prebys have collaborated the University of Pittsburgh Cancer Institute to reveal a new approach to enhance the effects of immunotherapy in glioblastoma, one of the most aggressive and treatment-resistant forms of brain cancer.
The study, published recently in Cancer Discovery, describes a novel method to ‘turn off’ cancer stem cells—the malignant cells that self-renew and sustain tumors—enabling the body’s own defense system to take charge and destroy tumors.
“Tumors are more than just masses of cells—each one is a complex system that relies on a vast network of chemical signals, proteins and different cell types to grow,” says senior author Charles Spruck, PhD, an assistant professor at Sanford Burnham Prebys. “This is part of why cancer is so difficult to treat, but it also presents us with opportunities to develop treatment strategies that target the machinery powering tumor cells rather than trying to destroy them outright.”
Glioblastoma is an extremely aggressive form of cancer that affects the brain and the spinal cord. Occurring more often in older adults and forming about half of all malignant brain tumors, glioblastoma causes worsening headaches, seizures and nausea. And unfortunately for the thousands of people who receive this diagnosis each year, glioblastoma is most often fatal.
“We haven’t been able to cure glioblastoma with existing treatment methods because it’s just too aggressive,” says Spruck. “Most therapies are palliative, more about reducing suffering than destroying the cancer. This is something we hope our work will change.”
Immune checkpoint inhibitors—which help prevent cancer cells from hiding from the immune system—can be effective for certain forms of cancer in the brain, but their results in glioblastoma have been disappointing. The researchers sought a way to improve the effects of these medications.
“Modern cancer treatment rarely relies on just one strategy at a time,” says Spruck. “Sometimes you have to mix and match, using treatments to complement one another.”
The researchers used genomic sequencing to investigate glioblastoma stem cells. These cells are the source of the rapid and consistent regeneration of glioblastoma tumors that make them so difficult to treat.
The team successfully identified a protein complex called YY1-CDK9 as essential to the cells’ ability to express genes and produce proteins. By modifying the activity of this protein complex in the lab, the team was able to improve the effectiveness of immune checkpoint inhibitors in these cells.
“Knocking out this transcription machinery makes it much more difficult for the cells to multiply” says Spruck. “They start to respond to chemical signals from the immune system that they would otherwise evade, giving immunotherapy a chance to take effect.”
While the approach will need to be tested in clinical settings, the researchers are optimistic that it may provide a way to improve treatment outcomes for people with glioblastoma.
“What our results tell us is that these cells are targetable by drugs we already have, so for patients, improving their treatment may just be a matter of adding another medication,” adds Spruck. “For a cancer as treatment-resistant as glioblastoma, this is a great step forward.”
Institute News
How a breast cancer advocate shapes research at Sanford Burnham Prebys
An end goal of all biomedical research is improving outcomes for patients living with illness, but far too often, patient’s voices are not heard in the process. Advocacy programs, such as those offered by the Susan G. Komen Breast Cancer Foundation, help give individuals battling illness a voice in the lab. They also provide critical insights for the researchers doing the science.
To learn more about the role of patient advocates in cancer research, we spoke with Svasti Haricharan, PhD, an assistant professor at Sanford Burnham Prebys, and Karen McDonald, a patient advocate working with Haricharan’s team. Karen, a retired computer applications professor, has been working with Svasti’s group since 2020 and has battled three forms of cancer in her life, including her current fight with metastatic breast cancer, which began in 2020.
Today, she is helping in the broader fight against cancer by bringing her unique perspective to the lab, both as a retired scholar and as a woman living with cancer.
What do patient advocates bring to the lab and why are they so important?
Karen: I was a neurology technician many years ago, so I have some science background, but I’m not an expert in the type of science that Svasti and her team do. I look at things from a patient’s point of view – not as a scientist or a doctor. I ask questions most patients would ask—but not necessarily questions scientists think about.
One of the things I’ve learned is that I need to have research presentations ahead of time—before a lab meeting—so I can figure out the technical terms. Once I’ve done that, I can bring a real-life perspective to the research—because the scientists aren’t treating patients. Svasti and her team thankfully welcome my input.
Svasti: I agree completely. Having an advocate really helps me and everybody else on the team see things in a completely different way. I think the experience also helps humanize scientists, because it’s easy, especially in biomedical research, to become so focused on the next paper or the next grant that we forget we came into research not to publish papers, but to do amazing science and help people. And having Karen’s perspective does influence what we do.
For example, there was a project on nutraceutical research, or using food as medicine, which a lot of funders don’t want to support because some people think it’s just made up. I was ready to give up on the project because it wasn’t getting support, but Karen brought up the point that patients would love to see this transitioned into the clinic because it’s less toxic with fewer side effects. I went to the top at Sanford Burnham Prebys and actually got funding to develop a drug to mimic the nutraceutical’s effects. I’m not sure this would have happened without Karen’s input—and now we are hopeful for the results.
How far have we come toward giving patients their due voice, and what are some hurdles we need to overcome?
Karen: As times have changed, physicians have stopped being thought of as gods and have started to be more human. They make mistakes. And women in particular have become more active in their healthcare because we were ignored for so long. When women started to speak up, doctors started to listen. I think is why patient advocacy started with breast cancer. Women are communicators and take an integral role in their family’s healthcare. But we still have a long way to go in terms of giving advocates’ voices full consideration.
Svasti: Karen brings up a great point here that women are more used to having to fight to have their voices heard, and that’s why breast cancer helped start the patient advocacy movement through organizations like Susan Komen. It’s beginning to spread beyond breast cancer as more funding agencies are including advocates as grant reviewers, because these are the people who are going to benefit directly from the research.
I think one thing that’s still a problem is not taking an advocate’s input seriously enough. I often see grant applications where the advocate says that a project is very significant, but other reviewers find some nitpicky aspect of the research strategy they don’t like, and the grant doesn’t get funded. There must be a better way for patient advocates’ voices to be included, as opposed to just having them on a review panel to check a box.
What’s something you’d want to tell people who may not know much about cancer research or patient advocacy?
Karen: People need to take it upon themselves to learn more about how research is done. There is such a big divide between scientists and patients, and that’s part of why patients go unheard. Even when you ask your physician about the latest research, they don’t always know.
It’s great that we have the internet now to help. I have a friend with lymphoma and that’s what we spend our time doing – researching the latest science, because we want to make sure we’re in charge of driving our own bus, not letting others have full control.
We need an environment of open-mindedness and willingness to learn. And that goes for physicians as well. We need bridges to connect cancer researchers with the oncologists who are actually going to implement their work and help humanity.
Svasti: That’s such an important idea because just like patient advocates, working with clinicians is sometimes a check box for researchers as well. It’s essential that we have meaningful collaborations—between science and medicine—that can advance research breakthroughs and improve patient outcomes.
I once spoke at a conference that had both patient advocates and researchers, and an advocate came up to me after my talk and asked, “Well what are you doing about this? If your research is real and important, why aren’t you bringing this to clinicians to get this into a clinic to help me?” That really blew my mind, because even though my role is to study cancer in the lab, she was right. Just like we need patient advocates in the lab, scientists need to advocate for research that will help patients the most.
Saying Goodbye to Dawn Dunsmore: A reflection from Josh Baxt
In September 2021, we lost Dawn Dunsmore to breast cancer, a disease she fought for a decade. Dawn was one of Sanford Burnham Prebys’ many committed administrators, most recently in Carl Ware’s lab, before stepping down to pursue treatment. She was a mom, an adventurer, an animal lover, a stubborn fighter and a friend to many, myself included.
Dawn had the bad luck of developing triple-negative breast cancer—one of the deadliest—and the good luck of being surrounded by people who loved her. She had been working for Carl for about two years when she told him about the lump in her chest. She was quickly diagnosed and treated, but the tumor soon returned.
“Dawn was approaching the end very quickly,” says Bobbie Larraga, Community Relations Manager and one of Dawn’s closest friends. “She was having seizures and difficulty breathing, and we were starting to make end-of-life plans.”
In the background, Carl, a world-renowned immunologist, helped Dawn get into a Moores Cancer Center clinical trial for an immunotherapy (PD-1 inhibitor) that takes the brakes off T cells, allowing them to attack tumors. PD-1 inhibitors work for about a third of patients and, fortunately, Dawn was one of them.
“It’s even crazier because breast cancer is not one that typically responds well to checkpoint inhibitors,” says Carl, who directs the Infectious and Inflammatory Disease Center at Sanford Burnham Prebys. “She was lucky to have that response.”
When they work, immunotherapies are like a little miracle, and Dawn did not take that lightly. She’d been given a reprieve and had things to do.
“She was just crazy for travel,” says Bobbie. “She went with her daughter to Spain. Italy, Indonesia, India, Central America. She went skydiving and was able to really check off things on her bucket list.”
But the cancer never quite went away. There were more treatments and surgeries and at 51, she finally ran out of options. Even in September, when the hospital would not release her, she was planning a trip to Yosemite.
Thinking Forward
There are so many stories. Bobbie shared how Dawn interviewed her when she first applied at Sanford Burnham Prebys (then the Burnham Institute); how they had an instant connection. Carl described the incredible work they accomplished, and how her support helped him keep it together when his wife was dying of Alzheimer’s.
I don’t usually insert myself into the articles I write – it’s just not appropriate – but Carl asked if I would, and that got me thinking. I joined Sanford Burnham Prebys in 2008, and the first piece I wrote here was a news release for the faculty member Dawn was working for. I was pretty green and Dawn helped me through, the first time of many. She was a generous soul.
Dawn was one of our own and it hurts that she’s gone. Like many at our Institute, she worked long hours to shepherd papers and grants through and helped manage the labs where she worked. She didn’t complain, even when she had the right.
Her experience underscores Sanford Burnham Prebys’ important work. Immunotherapies were first tested in academic labs, much like ours. It also brings home that the statistics we read so often, five-year survival rates or whatever, are representations of real people. The long hours, the stress of so many deadlines, the weekends in the lab, there’s a reason for those. And it’s a good one.
