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.
A New Kind of Grant, Initiated by Donors
First, a committed group of volunteers raised funds specifically for osteosarcoma research, making it possible for St. Baldrick’s to issue its first Request for Applications (RFA) to researchers for a specific disease, outside of the Foundation’s normal grant cycles.
This fundraising effort is led by Michael Egge, father of Olivia, who began fighting osteosarcoma in 2017; and Katherine Lugar, whose niece Caroline died of osteosarcoma in 2015. Katherine later took the reins as chair of the St. Baldrick’s Board of Directors on July 1, 2019.
As a direct result of this fundraising, a three-year $1.5 million Osteosarcoma Collaborative St. Baldrick’s Grant to Cure Osteosarcoma was made in November 2018. Led by Dr. Alex Huang, this research team is pioneering work on two fronts — making the host environment in the lungs where these tumors nest and grow less hospitable, and using the immune system to attack osteosarcoma tumors directly.
The scientific reviewers for that grant faced a dilemma, though. Two top-notch proposals had taken completely different approaches to fighting osteosarcoma. If Dr. Huang’s project was an apple, Dr. Sweet-Cordero’s was an orange. How could we fund one, and not the other?
Battle Osteosarcoma Begins
So, St. Baldrick’s set about finding champions to raise the funds for Dr. Sweet-Cordero’s project, a collaboration with Dr. Katherine Janeway to allow for evaluation of novel combination therapies to treat osteosarcoma. Three families took on that challenge – and they were more successful than they had dreamed.
Dr. Sweet-Cordero is no stranger to them, as he had treated a child in all three of these families from the same small community near San Francisco. (Here’s a video with more on that story.)
Dylan was 9 years old when he fell on a playground and an x-ray showed he had osteosarcoma. He spent most of third and fourth grade getting chemotherapy and has had fourteen surgeries, so far.
Dylan’s dad Burt says, “About a month before Dylan was diagnosed, we actually went to the service of another boy, Tyler, in our neighborhood, who also bravely fought this disease. So without even knowing much about osteosarcoma, we already knew we had a battle ahead of us.”
Charlotte was diagnosed with osteosarcoma in her right leg in July of 2018, after her knee swelled up when she came home from summer vacation. She started chemotherapy two days before her 15th birthday and has spent over 70 nights in the hospital.
Charlotte’s mother, Alli, said that treatment has certainly helped her daughter as she gets back into the flow of teenage life. “She hopes to share her experiences with other kids in the Bay Area who are fighting cancer. And we are thrilled with Dr. Sweet-Cordero!“
“The treatment protocol for osteosarcoma hasn’t changed in 33 years,” says Dylan’s mom, Christina, “and of all the cancer treatment regimens out there, the chemotherapy is one of the most toxic… And there is no proven effective treatment for relapsed osteosarcoma.”
“We desperately need advances in the way we treat osteosarcoma,” says Burt, “and the only way to get there is by funding more osteosarcoma research.”
Organized by the families of Dylan, Charlotte and Tyler, the first Battle Osteosarcoma fundraiser has already brought in more than $573,000 — over half of what is needed for the four-year project. In addition to asking their community to support this important work, the group held a video game tournament, with about 70 kids participating – including Dylan and his siblings, Charlotte’s twin brother, and Tyler’s brother.
“I’ve been a pediatric oncologist for 20 years, and I can say with certainty that this is the most hopeful moment in my career and hopefully a transformative moment for our patients, where precision oncology approaches are really going to drive the way we treat our patients,” said Dr. Sweet-Cordero
He continued: “Osteosarcoma is one of the most genomically complicated tumors that we see in pediatric oncology, meaning that the genetics of the tumor are very different from one patient to another. No two patients are alike. Sometimes people refer to them as snowflakes, because each snowflake is unique. It is a very significant challenge for us, from the point of view of trying to identify the best therapies for each patient.”
Gene Sequencing Is Now Less Expensive, Leading to Better Potential Treatments
When the first human genome was sequenced in 2003, it was at a cost of about $1 billion. Today scientists can sequence an osteosarcoma patient’s normal DNA, and the DNA of their tumor, for about $3,000.
“This is a huge advance that can help us develop better therapies to treat our patients, to give each patient the best medicine, directed at their particular tumor,” says Dr. Sweet-Cordero. Using gene sequencing, Dr. Sweet-Cordero and Dr. Janeway hope to better define what combination therapies are best for patients with Osteosarcoma.
“What scientists can learn from this disease has broad applicability. A lot of the mutations and genetic alterations that we see in osteosarcoma are commonly seen in other cancers — other pediatric cancers, but also adult cancers, for example breast cancer and others. This adds potential for the entire cancer community.”
The official name of his grant is the St. Baldrick’s Grant to Battle Osteosarcoma in honor of Charlotte Murdoff, Dylan Toma & Tyler Yamagishi.
More Donor-Initiated Research to Come
In other exciting news this Sarcoma Month, a generous $1 million anonymous gift to the St. Baldrick’s Foundation is now funding another Request for Applications, this one for Ewing sarcoma. A select few of the 44 researchers who responded will be approved to submit full applications for the Martha’s Better Ewing Sarcoma Treatment (BEST) Grant for All, funded in honor of a remarkable teenager currently battling this disease.
If you are interested in funding a specific type of research through St. Baldrick’s please contact Grants@StBaldricks.org.
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