Discoveries that Shift Paradigms with Dr. Poul Sorensen
St. Baldrick’s is all about shifting paradigms. When three men decided to shave heads at their industry’s March 17, 2000 St. Patrick’s Day party, they didn’t set out to change the landscape of childhood cancer research funding. But today the St. Baldrick’s Foundation is the largest non-government funder of childhood cancer research grants.
Twenty years later, the paradigm shifts keep coming, and Poul Sorensen, MD, PhD has been a part of several of them. Last month we joined some very special guests on a visit to his lab at the University of British Columbia, where he is a Professor of Pathology and holds the Johal Endowed Chair in Childhood Cancer Research.
What Is Wilms Tumor?
What is Wilms tumor?
Wilms tumor is a cancer of the kidney. It is one of the most common types of childhood cancer, with approximately 500 new patients a year in the United States alone. It was named after German surgeon Max Wilms, who is credited with discovering the cancer in 1899. There are several other less common types of kidney cancer that affect children and teenagers. These include clear cell sarcoma, malignant rhabdoid tumor, and renal cell carcinoma.
Research Outcomes: Climbing Toward Cures for Childhood Cancers
Editor’s Note: Last August, we began a series of blog posts on the outcomes of research that you, our donors, help to fund. Becky Chapman Weaver, Chief Mission Officer, St. Baldrick’s Foundation, provides us with an update.
If you think of a new cure as the top of an enormous mountain, imagine all the work that comes before anyone can stand on that summit for the first time. It takes discovering which routes lead to the top and which are dead ends or sheer cliffs. It takes knowing how to avoid mountain lions, grizzly bears and avalanches. And it takes putting one foot in front of another thousands of times – and often mounting new ascents year after year.
In the world of research, we can think of basic science or laboratory work as the discovery that tells our climber which way to go. Without that, no one gets anywhere. Translational research is our climber using that knowledge to get uphill or to bring those discoveries to the benefit of patients. And a clinical trial tells us whether we’ve achieved the summit – or whether a treatment is more effective for patients than the previous standard of care.
Your support of the St. Baldrick’s Foundation makes every step of the climb possible. Already we have funded more than 1,500 grants, covering every stage of research. Here are a few recent examples of outcomes you can be proud of.
What You Should Know About Research into Rare Pediatric Cancers
Rare Disease Day is observed on the last day of February, but the St. Baldrick’s Foundation fights rare diseases year-round.
What is rare disease?
When it comes to cancer, or even diseases as a whole, “rare” is a misleading word.
In the U.S., a rare disease is defined as “any disease or condition that affects fewer than 200,000 people in the United States, or about 1 in 1,500 people.” About 72% of rare diseases are genetic, and of those, 70% start in childhood.
Worldwide, people with rare diseases make up less than 6% of the population. But more than 6,000 rare diseases have been identified so far, and they affect more than 300 million around the world. If these people were a country, they would be the world’s third largest nation.
Africa Brings Different Pediatric Cancer Challenges
On this International Childhood Cancer Day, let’s look at the continent of Africa and, specifically, a cancer researcher who is working to create a vaccine for a particularly frightening kind of cancer.
A Doctor Zeroes in on ‘Precursor Cells’ in Pediatric Cancer
Dr. Sam Behjati is a highly respected expert, based in the UK, who is doing cutting-edge pediatric cancer research. He’s the first-ever recipient of the Robert J. Arceci International Innovation Award from St. Baldrick’s, having received the grant in 2016. And he’s been laser-focused on finding the developmental origins of childhood cancers, including cells that might predict cancer in children, specifically in the kidneys.
But, in a recent interview to share his findings for the first time since winning the award, a surprising word came up a few times from Dr. Behjati: “wacko.”
“What the award has done is completely liberated me, to take a plausible idea and come up with the experiment and have the ability to stick out my neck and take a chance with wacko research.”
Interview with a Researcher: Meet Dr. Shannon Maude from CHOP
Editor’s Note: Shannon Maude, M.D., Ph.D. is a physician scientist at Children’s Hospital of Philadelphia (CHOP), where she has specialized in treating children with acute lymphocytic leukemia, or ALL. A member of the St. Baldrick’s Foundation — Stand Up To Cancer Pediatric Cancer Dream Team, she got her start in pediatric cancer research in part thanks to a St. Baldrick’s Scholar grant.
Two years of her scholar grant were funded by the Rally for Ryan Hero Fund. Ryan’s mom reports that he is “doing great” after his latest checkup in August 2019.
We recently discussed her career and her work with children impacted by ALL. An edited transcript of that discussion is below.
Creating a Future for Osteosarcoma Research
The St. Baldrick’s Foundation has always been committed to innovation. As the largest private funder of childhood cancer research grants in the world, it will be no surprise that we fund innovative science, but our commitment extends beyond that.
As part of our strategic plan, we challenged ourselves to find new innovative ways that we could partner with donors in order to help them realize their goals and get more dollars working to find better treatments and cures. We developed our own “venture philanthropy” program, one that allows a donor, or a group working together, to target in what they want to fund with more specificity and involvement than we have ever been able to do before.
The first group to join us in this new effort was the Osteosarcoma Collaborative. Led by Michael Egge, father to Olivia (who was diagnosed with osteosarcoma in February 2017), and current St. Baldrick’s Foundation board chair, Katherine Lugar, the Osteosarcoma Collaborative had a clear vision about what they wanted to accomplish through their fundraising and partnership with St. Baldrick’s. They wanted to fund research that needed support to push it over the finishing line – something that was very close to being ready to be put in a clinical trial and was specific to osteosarcoma research.
Increasing Enrollments on Clinical Trials Through Infrastructure Grants
St. Baldrick’s infrastructure grants are designed for one reason: treat more children on clinical trials, often their best hope for a cure. Thanks to the support of St. Baldrick’s Foundation donors, these grants, totaling nearly $1.5 million this cycle, will help treat more children on clinical trials. In this spirit, these grants primarily provide support for Clinical Research Associates.
The grand total of grants made by the foundation since 2005: $282 million. That’s an outstanding number – and we could not have done it without the support of you, our donors. Thank you!
Below, we’ve listed 25 institutions that are receiving infrastructure grants in this cycle. In this blog post, we highlight four of these grants – to help paint a fuller picture of what these grants make possible.
Research Outcomes: Next in a Series
In August of 2019, we blogged about several research outcomes that were fueled by St. Baldrick’s donations and published in scientific journals so that other researchers can build upon them. Research publications are a major way that science moves forward.
With more than 200 new publications a year resulting from research supported by St. Baldrick’s, we’ve decided to make this an occasional series, to highlight some of the most interesting outcomes you’ve made possible.
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