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.
July is Sarcoma Month, and since this is a disease that so often strikes children, teens and young adults, St. Baldrick’s supports a great deal of sarcoma research.
Only about 1% of cancers diagnosed in adults are sarcomas, but they make up 20-25% of cancers between the age of 10 and 20. The most common are osteosarcoma (bone tumors), Ewing sarcoma (bone or soft tissue tumors) and rhabdomyosarcoma (muscle tumors).
Dr. Alejandro Sweet-Cordero is one of many St. Baldrick’s grant recipients tackling sarcomas, and his funding was made possible by our donors in a unique way.
Dr. Jeffrey Toretsky is a St. Baldrick’s researcher at the Georgetown Lombardi Comprehensive Cancer Center in Washington, D.C. He explains what sarcoma is, how it’s diagnosed and treated, and how research is helping kids and adults with this type of cancer.
What is sarcoma?
A sarcoma is a bumpy tumor that occurs in the connective tissues (nerves, muscles and bones) anywhere in the body.
Sarcomas are rare, especially in young children. In kids between 10 and 20, sarcomas make up about 20-25% of childhood cancer diagnoses.
Sarcomas can start off being tiny lumps that you can’t feel. They can spread through the body, or metastasize, before they grow big enough to be seen.
What happens when you give a researcher funding and freedom to follow the science?
Just ask the Robert J. Arceci Innovation Award winner Dr. Kimberly Stegmaier. For her, that powerful combination of funding and freedom led to the discovery of a promising combination of molecules that could change the lives of kids with Ewing sarcoma, the second most common bone cancer found in children.
Jason Yustein, M.D., Ph.D., a St. Baldrick’s Scholar at Baylor College of Medicine in Houston, Texas, explains Ewing sarcoma symptoms, treatment options, and research opportunities.
What is Ewing sarcoma?
Ewing sarcoma is a type of childhood cancer that is most frequently found in children and adolescents between the ages of 10 and 20 years old.
Ewing sarcoma — the second most common bone cancer after osteosarcoma — often originates in the long, large bones of the body, including the hip, thigh, shin, chest, and arm bones.
Ambassador Alyssa celebrates two birthdays every year — one for herself, and one for her leg. Today, the anniversary of Alyssa’s first big surgery for childhood cancer, her mom remembers that day and shares how far Alyssa has come.
A joyful Alyssa is cradled by (left to right) her mom Michella, sister Kalie, dad Harold, and brother Jacob.
Someone recently asked me why December 16 is hugely significant to us as a family.
It’s the day my 11-year-old daughter Alyssa had a major surgery that changed her life forever.
It’s the day my sweet girl got a new leg.
Dr. Ralph Ermoian is a radiation oncologist and St. Baldrick’s infrastructure grant recipient at the University of Washington. He explains what proton therapy is, how it works, and how this treatment is helping kids and adults with cancer.
What is proton therapy?
Proton therapy is a type of radiation used commonly for children with cancer. Like traditional x-ray radiation, it is used to treat cancers, but proton therapy affects less of the healthy tissue surrounding the tumor.
One morning in the summer of 2013, Alyssa awoke to discover she couldn’t walk. The pain was intense and persistent. What her family thought was growing pains continued beyond that morning and into the next and the next.
September is Childhood Cancer Awareness Month. Do something to help kids with cancer.
Lilly was born with Ewing sarcoma, a type of childhood cancer.
When Lilly was 6 days old I had noticed a little bump on her upper chest wall. After an x-ray and an ultrasound, the doctors told me it was a birthmark and it was normal for it to get bigger as she grew.
In three months it had grown to the size of a golf ball and was starting to affect her breathing while she slept. I knew then that it wasn’t just a birthmark.
Shave your head for kids with cancer. Be a shavee℠.
Photos courtesy of Matt Janson Photography. See more of his work at mattjanson.com.
Here at St. Baldrick’s, we have the privilege of seeing a lot of beautiful bald heads. Whether it’s a #baldselfie on Facebook or a collection of inspiring event photos, we know that each naked noggin represents something wonderful: more funds raised for lifesaving childhood cancer research.
At the same time, a head shaved for St. Baldrick’s is a bold symbol that our shavees stand behind kids with cancer, who so often lose their hair during cancer treatment. Shavees let these kids know that they are not alone, that they have a friend in the fight against childhood cancers.
Photographer Matt Janson captured the shavee spirit when he set up a portrait studio at the Grand Junction, Colorado, head-shaving event in June. His second year at the event, Matt said it was the shavees themselves that drew him to St. Baldrick’s for another year.
“I’ve never been a part of any group that’s been able to take something so painful and turn it into a day of love, support, and remembrance,” Matt said. “I can’t even begin to describe how infectiously positive everyone is at the event.”
Here’s a look at a few of Matt’s portraits along with a few words from the shavees about what it means to be a shavee and why they believe childhood cancer research is a cause worth losing hair over.
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