Marielle Santos McLeod, Director of Strategic Programs and Partnerships at Cancer Hope Network and Patient Research Advocate at the SWOG Cancer Research Network, shared a post on LinkedIn:
“National advocacy during the week. Local community by the weekend.
One of the most powerful things about advocacy – at least in my journey – is that it is never ‘one size fits all.’ Patient advocates step into many different lanes: clinical research, community building, policy change, systems strategy. No matter the path, our collective goal is the same: to create a better road for those coming behind us so their quality of life improves because we chose to show up.
And yet, resources for young and early-onset adults remain limited – despite the reality that so many of us are facing cancer diagnoses far beyond our years.
My local young-onset community, The Boon Project, became my lifeline at a time when I felt completely alone. It didn’t just offer support – it offered belonging. That community continues to play an integral role in my survivorship. While I remain deeply involved, what I cherish most is how my role has evolved from simply receiving support to contributing in ways I once couldn’t.
This weekend, we hosted a simple community event – making blankets together. On the surface, it may not seem like much. But what truly happened was far more meaningful.
A 19-year-old patient walked into a room longing for peers who understood her reality. She needed a space where she could show up fully as herself – without explanation, without minimizing, without fear. I remember that feeling vividly.
The first time I attended a Boon event, I was bald. I had my chemo pump attached. I hadn’t yet been around anyone close to my age with cancer. I was terrified. But our fearless leader, Katherine Brown, noticed every unspoken detail. I was welcomed with open arms by my fellow ‘Boonies.’ There were refreshments I could actually tolerate despite my cold sensitivity. That intentional inclusion changed everything. I felt seen.
Last night, I paused and viewed our gathering through my professional, strategic lens. What I witnessed amazed me.
- The stories we shared? Mini insight groups.
- The side-effect conversations? Real-world patient-reported outcomes.
- The survivorship discussions? Health literacy in action.
No forced agenda. No self-serving motive. Just lived experience being exchanged across cancers, ages, ethnicities, and perspectives. Organic, powerful, necessary.
This is advocacy, too.
It’s not always in boardrooms or on policy calls (though those matter deeply). Sometimes it’s in a circle of survivors cutting fabric and stitching blankets – building safety, confidence, and community in ways the healthcare system doesn’t always know how to provide.
I am incredibly grateful to be part of a community that refuses to let young adults feel isolated. A community that cares about our whole well-being – especially in the gaps where our medical teams may not yet know how to meet our true needs.
Advocacy doesn’t have one shape.
But it always has one purpose: leaving it better than we found it.”
Other articles featuring Marielle Santos McLeod on OncoDaily.
