Osteosarcoma Collaborative on a Mission for Life

Photo | Submitted Olivia Egge and John Benjamin Varney, who were diagnosed with osteosarcoma in 2017 and are both currently in treatment, attended the Oct. 17 reception for Dr. Alex Huang, who was awarded the first Osteosarcoma Collaborative St. Baldrick’s Grant to Cure Osteosarcoma.

Photo | Submitted
Olivia Egge and John Benjamin Varney, who were diagnosed with osteosarcoma in 2017 and are both currently in treatment, attended the Oct. 17 reception for Dr. Alex Huang, who was awarded the first
Osteosarcoma Collaborative St. Baldrick’s Grant to Cure Osteosarcoma.

According to the Osteosarcoma Collaborative’s home page, “We exist because new treatments for osteosarcoma don’t.”

Established in 2018, the charity is on a mission to fund new research, raise awareness and find cures for osteosarcoma, an aggressive form of bone cancer. Someone who knows firsthand is North Potomac resident Miriam Cohen. A founding board member and secretary of the Collaborative, her son Austin, a student at Quince Orchard High School, succumbed to the disease days before his 17th birthday in May 2017.

Cohen said the Collaborative is a banding together of like-minded people who want the treatment landscape for osteosarcoma to provide more options that will lead to more lives saved. “The research community has not moved forward with new treatments, so I felt a calling to help that along. … My son was willing to do anything and there just wasn’t anything, and the stuff that he did was very toxic,” she said.

Austin’s symptoms began with pain in his knee. “Basically, we were a completely normal, everyday family and my son was active in football,” said Cohen. When Austin was diagnosed in February 2014, “it just shook our world because he was in pain and suffering and there was nothing you could do about it even though you had the best (medical care) around you. … He did nothing wrong, but the lack of medical research in osteosarcoma failed him.”

Cohen said doctors told the family they had a “30-year proven treatment plan. I later found out it was the only treatment plan for the last 30 years.”

She refers to osteosarcoma as an “orphan disease” because “there’s not enough research, attention and money dedicated to figuring out a cure as there is with breast cancer. When you’re pediatric, you’re left out of some trials because you’re under 18.” The May 2018 passage by Congress of the STAR Act (Survivorship, Treatment, Access and Research) will “open up more trials to pediatrics as well,” Cohen said. “I’d like to think children and adults would all be treated the same. … Treat the tumor and not the age group.”

Photo | Submitted Dr. Alex Huang was awarded the first Osteosarcoma Collaborative St. Baldrick’s Grant to Cure Osteosarcoma.

Photo | Submitted
Dr. Alex Huang was awarded the first Osteosarcoma Collaborative St. Baldrick’s Grant to Cure Osteosarcoma.

On Oct. 17 the Collaborative, in partnership with St. Baldrick’s Foundation, awarded the first Osteosarcoma Collaborative St. Baldrick’s Grant to Cure Osteosarcoma to Dr. Alex Huang of Case Western Reserve University School of Medicine in Ohio. Dr. Huang’s research is focused on “targeting myeloid and lymphoid immune tolerance in metastatic osteosarcoma.” His proposal included a multi-institutional collaborative to explore tumor-extrinsic pathways by which pulmonary metastatic osteosarcoma evade immunity.

Cohen said the Collaborative has committed to fund a 3-year ($450,000 per year) osteosarcoma project through St. Baldrick’s, which “has already done so much in this world (osteosarcoma), has a brand name and an infrastructure established that can be utilized for the scientific review of the grant proposals received.” To date, $900,000 dollars has been raised toward its 1.5 million goal.

“The docs who have dedicated their lives to this disease, they just need help. … We all have to join forces together and bring awareness and help fund research. I hope everybody that knew and knows what Austin taught us will take that and do something better in this world because of it and, frankly, that’s why I’m doing this because like he wanted his tumors to help research, I just want to help so it doesn’t happen to somebody else,” explained Cohen.

She shared notations from one of the grant reviewers who wrote, “It would be great to fund an immunotherapy and a molecular targeted grant … coming at osteosarcoma with two completely different approaches … it’s really going to take all of these approaches to make a big difference.”

Toward that goal, the Collaborative and its founding members, who include Cohen, Theresa Beech, Michael Egge, Ben Moody and Christiane Robbins, are committed to working on funding a second standout grant applicant, Dr. Eric Sweet-Cordero at the University of California, San Francisco. His proposal includes “enabling genome-informed combination therapy for osteosarcoma. Unlike other pediatric cancers, osteosarcoma has many abnormalities found on genetic analysis of the tumor itself. We hypothesize that some of these abnormalities could be used to predict what treatment might work best for each specific osteosarcoma patient.” Cohen shared, “The two (grant applicants) that stood out were doing something different than other people and it was something that could potentially come to fruition quickly.”

According to the American Cancer Society, “osteosarcoma is not a common cancer. Each year, about 800 to 900 new cases of the disease are diagnosed in the United States. About half of these are in children, teens and young adults between the ages of 10 and 30. Teens are the most commonly affected age group, but people of any age can develop osteosarcoma. About 10 percent occur in people older than 60.”

Shortly before Austin’s passing, Cohen said he told an N.I.H. social worker that he wanted to donate his tumors to Dr. Rosandra Kaplan’s lab to be used to further cancer research. Cohen noted, “This was his final surgery and it was a very respectful surgery. She’s using his tumors in the lab to further her research about osteosarcoma.”

Cohen shared some of Austin’s words to live by: “Man, I know you all probably hear this a lot but seriously, just do what makes you happy, that’s what it’s all about really.”

For more information, visit www.oscollaborative.org.

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