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?
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.
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.
Read on for updates on the State of the Union, the President’s budget proposal, and events during Rare Disease Week on Capitol Hill.
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.
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.
Susan L. Cohn, M.D., chair of the St. Baldrick’s Scientific Advisory Committee and world renowned neuroblastoma expert, explains what neuroblastoma is and how St. Baldrick’s research is contributing to better outcomes for patients.
We hope you are having a great start to the new year! Read on for legislative updates, upcoming meetings and events, and ways to get more involved as we hit the ground running in 2020.
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.”
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.
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