People often ask me why I became a Board Certified Patient Advocate.The answer isn't a single moment. It's a lifetime of learning what it means to stand beside someone you love when the healthcare system suddenly becomes part of your everyday life.
In 2008, my father was diagnosed with pancreatic cancer. I spent the time between his diagnosis and his passing at his side, learning firsthand how quickly life can change and how overwhelming a serious diagnosis can be for an entire family.
It was during those months that I began to understand the importance of asking questions, staying organized, and making sure every day counted.
In 2019, I moved to New Hampshire for several months to care for my son during a serious medical diagnosis.
Once again, I found myself navigating specialists, treatment decisions, and the countless details that come with coordinating care.
Every experience reinforced the same lesson. Patients and families need someone who can help them make sense of an incredibly complicated system while never losing sight of the person at the center of it.
I became the researcher, the organizer, the note taker, and the advocate. I built relationships with physicians, tracked every appointment, organized every record, and searched tirelessly for every possible option.
When Russ's cancer became metastatic, our oncologist believed daraxonrasib offered hope. Although he qualified for treatment through Expanded Access, gaining access was anything but simple.
What followed was months of persistence, coordination, and advocacy that ultimately reached thousands of people across the country.
We refused to stop until the opportunity he had been granted became a reality.
Today, Russ is receiving treatment, and every good day reminds me why advocacy matters.
I know what it feels like to hear a diagnosis that changes everything. I know what it feels like to sit through appointments trying to understand what comes next, to coordinate care while searching for answers, and to wonder whether you're asking the right questions.
These experiences didn't simply teach me how to navigate healthcare. They showed me how important it is to have someone beside you who understands the system, helps you find your voice, and makes sure you don't have to navigate it alone.
I know what it feels like to hear a life-changing diagnosis.
I know what it feels like to sit through appointments while trying to remember every word.
I know what it feels like to coordinate care, keep records, make phone calls, and search for answers when the stakes could not be higher.
Most importantly, I know that no patient or family should have to navigate that journey alone.
My role is not to replace your medical team.
My role is to help you understand the path in front of you, ask the questions you may not know to ask, stay organized, and make informed decisions with confidence.
Whether you are newly diagnosed, facing a complex medical situation, or caring for someone you love, my goal is simple.
To be the advocate I know can make all the difference when life changes in an instant.
Marnie Reed, BCPA
Board Certified Patient Advocate
[email protected]
772.240.2662