Two years ago, a group of three dedicated moms rallied some dear friends to achieve what seemed like an ambitious goal to support osteosarcoma research. As you’ll see below, they knocked that one out of the park!Battle Osteosarcoma volunteers set out to raise $150,000, then raised more than $1.3 million!
At the same time, their families have continued to deal with the realities of childhood cancer. Jennie Yamagishi had already lost her son, Tyler, to the disease when this effort began. Christina Ip-Toma’s son, Dylan, was still fighting when she asked the others to join in. On March 4, 2021, 49 days past his 5-year survivor mark, this incredible 14-year-old passed away. Alli Murdoff’s daughter, Charlotte, is now back in treatment, counting on research progress to give her more options.
We asked these three amazing women to answer a few questions.
Q: You’ve led Battle Osteosarcoma to raise more than $1.3 million for research through St. Baldrick’s. Tell us how you decided to take on this challenge.
Christina Ip-Toma: My son Dylan was diagnosed with osteosarcoma in 2016 when he was nine years old. As we learned more about the disease, we were so dismayed to learn that 1) osteosarcoma treatment has not changed in nearly 40 years and 2) there is no effective treatment protocol for relapsed osteosarcoma and lastly 3) there is a poor survival rate for relapsed osteosarcoma.
We realized the only way to change those 3 dismal facts is to invest in research and, inspired by another osteosarcoma family that had collaborated on a grant with St. Baldrick’s Foundation, the idea for Battle Osteosarcoma was born.
Jennie Yamagishi: My son, Tyler, died from osteosarcoma in 2015 and when Christina asked me to join their efforts, I had to help. The possibility that Dr. Sweet-Cordero’s research can make one child’s life a little better than Tyler’s was worth the effort. Raising funds is easier than finding solutions to osteosarcoma.
Alli Murdoff: My daughter, Charlotte, continues to fight osteosarcoma since her diagnosis in 2018. In 2019, when she was NED [no evidence of disease], I was approached by dear friends to help raise funds for this terrible disease, which has severely impacted a number of families in my small town.
We sat around a kitchen table and set an initial goal of raising $150,000 for the Sweet-Cordero Lab at UCSF, which was particularly meaningful to me since kids from Charlotte’s school were affected, and because Dr. Sweet-Cordero is Charlotte’s oncologist. Our initial fundraising goal later turned into $1,350,000, with the help of St. Baldrick’s Foundation and the support of our incredibly generous community.
Q: How did you rally such incredible support from your community and networks?
Christina: We live in an amazing community, and we have incredible friends that can accomplish pretty much anything they set their minds to! But really, I think it is our OsteoWarriors – Char, Dylan and Tyler who inspire and motivate people to act. Family, friends, and neighbors who have heard their stories and have witnessed how horrible and devastating this disease is and know what an incredible toll this takes on patients and their families – they understand that the current state of osteosarcoma is not acceptable. We need to improve treatment options and outcomes.
Jennie: The group worked on many different viable ideas before choosing but a kid-focused event was always in the plan. Our community is made up of children and adults impacted by osteosarcoma and all wanted to participate in raising funds. Kids donating to play in a videogame tournament to raise funds was just as important as the big fundraising events.
Q: What would you like others to know about the importance of this research project?
Christina: Every single dollar that is donated to this research project will make a difference. This is a disease that has not seen much investment which is why treatment and outcomes have not changed in nearly 40 years. So the impact of every dollar is significant.
Q: How do your families – especially your kids – feel about this?
Jennie: Raising funds to support osteosarcoma research gave our family hope that other kids wouldn’t have to suffer like our son. Now the pressure is on Dr. Sweet-Cordero to come up with research that moves osteosarcoma treatment forward.
Alli: My children are incredibly proud of their sister, Charlotte, for staying positive with all she has endured over the past three years. They have participated in many aspects of Battle Osteosarcoma, from social media posts to event support. They have learned much about this disease, how it affects families and the critical need for advancements in research.Dr. Sweet-Cordero and Charlotte celebrate Battle Osteosarcoma reaching its goal.
My children are impressed we’ve mobilized an army of supporters to rally around this cause. With Charlotte’s disease metastasizing and becoming more aggressive over the years, my family’s appreciation has grown with the generosity of our donors to Battle Osteosarcoma. We are all very aware of the funding deficit toward pediatric cancer research, and how desperately needed it is.
Q: What has surprised you most about this experience?
Alli: Over the past three years, I have learned that a community’s love and support runs deep. We could not have achieved the success that we did for Battle Osteosarcoma without our community. Friends, family, teachers, colleagues and acquaintances supported us in ways we never dreamed. Frustration over the lack of funding for pediatric cancer fueled their desire to fight this disease and stand in solidarity with us. They put a wind in our sails to keep raising additional money for research to improve outcomes for osteosarcoma.
We led Battle Osteosarcoma, but our community was the vehicle that drove us to far surpass our fundraising target and provide funds necessary for critical research.
Christina: Collaboration between patients/caregivers and the medical research community is a very powerful tool to increase focused investment in research. It really is a team effort. If the patient community can help fund research, the scientists can spend less time applying for grants, and more time in the lab on science which will accelerate discovery.
Read on to learn about the research Battle Osteosarcoma is funding through St. Baldrick’s at the University of California San Francisco.
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. [2021 update: This extraordinary boy died March 4, 2021]Dylan
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. [2021 update: Charlotte has relapsed and has been participating in a clinical trial also supported by St. Baldrick’s.]Dr. Sweet-Cordero and Charlotte
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. [2021 update: The group has funded the entire $1.35 million grant!] 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.Tyler
“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.
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