Finding herself on a pediatric ward something inside her changed and she became determined to do something to help the youngsters who were being robbed of so much. Read her truly inspiring story in our most recent Women in Science feature, we were truly humbled after speaking with her.
Could you give us an overview of your work?
My work is leading a mission-driven nonprofit organization called MIB Agents Osteosarcoma Alliance, or We Make It Better (MIB) which is for kids and young adults with an aggressive bone cancer called osteosarcoma. This cancer affects kids, typically age 10-20. Together with a dedicated and passionate community, we provide patient-facing programs of support, education on the disease with and for the leading experts and patients, and we fund osteosarcoma research.
When did you realize you were interested in science - as a young child, teen, or older?
Definitely older! At the age of 43, I received a shocking diagnosis: osteosarcoma, a rare bone cancer usually affecting children and young adults. Despite my age, I was treated on the pediatric cancer ward, where I witnessed firsthand the devastating impact of this underfunded and under-researched disease. Surrounded by young patients fighting for their lives and facing my own uncertain future with limited treatment options, I felt a profound shift within me. It was then that my interest in science was ignited, fueling my desire to make a difference for kids with cancer. The interest came in the form of unanswered questions like; why are kids dying of cancer, who is working on this, where is the funding, why have there been no new treatments in my cancer in over 40 years? The answers were unsatisfactory and solvable. We needed awareness, funding, research, collaboration, and clinical trials.
Could you describe your personal journey bringing us to where you are now?
I finished treatment in July 2011. The same day I had my first clean scans showing no disease, a girl I was treated with had scans that showed new metastatic disease. They amputated her affected leg and went on a trial that failed. When her mother called to tell me, they were ‘sending her home to die’ I didn't handle it well. How could she be dying when she didn't get to high school, have her first kiss, pursue her dreams? Why her and not me? I imagined her younger sister's enduring memories of her being in her living room in a hospital bed. I had to do something.
My friends, family, and I planned a weekend in NYC for her doing big things like The Rocketts with backstage passes, a Broadway show with a VIP experience, a luxury hotel suite, and finally the Nutcracker at Lincoln Center for she was a dancer. They let her on stage, where she danced impossibly, and beautifully, with her one remaining leg. She passed away two weeks later, just shy of her 12th birthday. This set me on a path to creating end-of-life missions for kids I was treated with. As the kids I adored continued to suffer and die, I knew I had to do more. In 2017, I launched the world's first osteosarcoma research conference, uniting patients, families, researchers, and clinicians in a collaborative effort to drive progress against this disease. The conference continues to be a catalyst for advancements in osteosarcoma research, offering hope for a brighter future, for life.
What challenges did you face - as a woman or otherwise - along the way and what is the most valuable lesson you have learned?
Funding is definitely a challenge. We are up against misinformation that kids don't get cancer, and if they do, it is curable and doesn't cost anything. Thus, getting funding for childhood cancer is difficult. People do not realize that nonprofits are foundational for providing funding for medical research, I certainly did not understand this before I was diagnosed.
What ignites your passion in your current role?
The people I work with and serve ignite my passion every day. The dedication of doctors and researchers we work with who are striving to improve outcomes, the tireless efforts of our all-women leadership team to innovate and empower our community, and the unwavering commitment of families who've lost children to osteosarcoma yet continue to fund research with us to spare others from similar heartbreak—it's all incredibly inspiring.
Our Junior Advisory Board, comprised of young adults aged 15-22 who are either in treatment, hospice care, or are siblings of those who've passed, constantly fuel my drive. Their passion to help others with osteosarcoma is remarkable. They've wholeheartedly shared their patient experiences at conferences, the NIH, Capitol Hill, and even the White House, ensuring our mission stays front and center.
These individuals, their resilience, and their unwavering hope are the driving force behind my commitment to this work.
What is your current work ethos/style?
I founded this organization inspired by the words of Mother Teresa, who said, "if you invite me to an anti-war rally, I will never attend. If you invite me to a pro-peace rally, I will show up every time." This resonates deeply with me. I believe in fostering dialogue, collaboration, and knowledge-sharing, not conflict. A mission of this magnitude requires a collective effort, uniting diverse perspectives and experiences.
I wholeheartedly believe in our work and its purpose. I value and trust the people I collaborate with and respect their opinions and ideas.
Could you share some advice for young women starting to develop an interest in science or wanting to pursue a career like yours?
A few years ago, I was asked this question on a mentorship day at my high school. My answer was that everything they're learning now truly matters. I wish I had realized that sooner. STEM subjects are crucial, but so are storytelling, art, music, and even gym class. You're meant to be a well-rounded person, not just a scientist or mathematician. Embracing all these areas of knowledge will enrich your life and understanding of the world, especially when it comes to connecting with people. Value every opportunity to learn, and always follow your curiosity – it will lead you to incredible places.