I’m still thinking about my time at the Miami Precision Biannual Conference in Fort Lauderdale. It’s one of those experiences that really stays with you.
From the moment I arrived, everything just felt aligned. The weather was beautiful- blue skies, sunny and warm, and it set the tone for the entire weekend. Even the commute there felt memorable. On the way to the hotel, I caught a glimpse of an outdoor concert featuring Ice Cube and Post Malone!
When I arrived at the conference location, I was welcomed right away, and it was clear how thoughtfully organized the conference was. Walking through the space, I saw booths from patient advocacy organizations and pharmaceutical companies that I am familiar with. It was incredibly powerful to see so many people in one place, all working towards improving the lives of patients.
One of the most meaningful conversations I had was from the co-founder of the KRAS Kickers. He shared how his wife started the organization and continues to lead it, and you can feel how personal that mission is to him. His message about the importance of patient self-advocacy really stayed with- that sometimes, getting the right care means asking questions, pushing for answers, and not being afraid to take an active role in your own treatment journey.
I also had the chance to connect with many survivors. One that stayed with me was a young patient who discovered a hereditary cancer mutation after a family diagnosis, which ultimately led to early detection of her own cancer. Now in remission, she continues close follow-up care with a multidisciplinary team due to her genetic risk. What stood out most was her openness about the emotional and mental challenges of her journey,not just the physical aspects, and how she has turned her experience into advocacy for early detection, genetic testing, and mental health.
A personal highlight for me was being part of the panel “Thriving Beyond Cancer Risk or Diagnosis — Practical Self-Care Strategies.” It was such an honor to be included in that conversation. When I was asked how education has shaped my self-care, especially in the rare cancer space,I shared that knowledge has been one of the most grounding and empowering tools. It doesn’t take away the uncertainty, but it helps you navigate it. It allows patients to ask better questions, seek out the right specialists, and feel a sense of control in situations that often feel overwhelming.
When asked what advice I would give to someone newly diagnosed or at high risk, I said something I truly believe: you don’t have to go through it alone, and you shouldn’t. Finding your community, whether it’s through patient groups, specialists, or others who understand your experience can make all the difference. And just as importantly, don’t be afraid to use your voice. Your concerns, your questions, your instincts—they matter.
I also had the opportunity to meet Dr. Jonathan Trent, which was incredibly meaningful. He was warm, approachable, and clearly passionate about helping patients, especially in the rare cancer space. It’s always reassuring to meet clinicians who truly see and care for the whole patient.
One of the most full-circle moments for me was meeting a Life Raft Group GIST patient at the conference. He shared that he came specifically to learn more about his condition. That moment really stuck with me because that’s exactly what self-advocacy looks like. It was a powerful reminder of why access to education and community is so important.
Overall, I left the conference feeling grateful, inspired, and proud. Grateful to have been there, inspired by the people and stories I encountered, and proud to represent The Life Raft Group. Being able to bring the GIST patient voice into that space meant a lot to me.
Experiences like this remind me why this work matters so much. When patients, advocates, and clinicians come together, there’s a real sense of purpose!
