Some conversations stay with you because they are polished.
Others stay with you because they are honest.
This conversation with Oscar Ortiz did not revolve around strategy decks or theory. It revolved around lived experience. Loss. Gaps in systems. And the choice to turn grief into action that helps other families survive the unthinkable.
Oscar is the co-founder of Sebastian Strong, a foundation created after the loss of his son following fourteen months of pediatric cancer treatment. His story is deeply personal, but the lessons he shared apply far beyond pediatric cancer. They speak to leadership, nonprofit effectiveness, systems design, and the power of clarity when the stakes are high.
This blog pulls out the most practical lessons from the conversation and translates them into tools you can use right now.
Lesson One: Awareness Is the Highest-Leverage Action
Oscar was clear about this.
If you want to help children with cancer, the most powerful thing you can do is raise awareness.
Most people, including educated professionals, have no idea that many pediatric cancer treatments are forty to fifty years old. They do not know that childhood cancer research receives a fraction of the funding allocated to adult cancers. They do not know that five-year survival is often treated as success, even when a child faces decades of severe health consequences if they live.
You cannot act on what you do not know.
Practical tool:
Commit to sharing one credible source of information once a month.
That might be a nonprofit website. A navigator program. A research update. You do not need to be an expert. You only need to amplify information people would not otherwise encounter.
Once someone knows, they cannot unknow it. The choice to act becomes theirs.
Lesson Two: Systems Fail People in Crisis
So Build Handholding Into the Design
One of the most important insights from this conversation is how overwhelming medical systems become during a crisis. Even educated, resourced parents experience cognitive overload when told their child has cancer. Reading comprehension drops. Decision-making narrows. Time feels distorted.
Oscar described this clearly. Parents are not failing to navigate the system. The system is failing them.
Sebastian Strong’s Navigator Program exists because people fall through the cracks when systems assume rational, calm users.
Practical tool:
When designing any program, ask one question.
What happens when the person using this is emotionally overwhelmed?
Then design for that reality. Build in human contact. Slow explanations. Follow-ups. Clear next steps.
If your system only works for calm, resourced people, it does not work.
Lesson Three: Lived Experience Builds Credibility Faster Than Credentials
One of the most effective elements of the Navigator Program is that the patient advocate is also a childhood cancer parent. This is not symbolic. It is functional.
Families trust faster. Conversations are more direct. Emotional reactions are not taken personally. The advocate can hold space while navigating logistics.
This principle applies everywhere. In nonprofits. In leadership. In service design.
Practical tool:
Identify where lived experience would strengthen trust.
That does not mean retraumatizing people or asking them to relive pain. It means honoring the expertise that comes from experience and placing it where decisions are made.
Credibility is not always about degrees. Sometimes it is about having walked the road.
Lesson Four: Run Nonprofits Like Businesses
Without Losing the Mission
Oscar was direct about this.
A nonprofit is still a business.
Revenue matters. Efficiency matters. Messaging matters. The difference is not how money is made. It is where it goes.
Sebastian Strong raised more than $1.4 million in a year with a team of two. Not through massive donations. Through grassroots fundraising, clear messaging, and relentless clarity about the gap they fill.
Practical tool:
Clarify your value in one sentence.
Answer these questions plainly:
- What problem do you solve?
- What gap do you fill?
- Why does it matter now?
If you cannot answer that clearly, neither can your supporters.
Pity funding fades. Purpose-driven funding lasts.
Lesson Five: Small Teams Win Through Complementary Strengths
Oscar openly acknowledged that his background in corporate sales prepared him for fundraising. He also acknowledged that he is not an operations person. The organization works because roles are clear and skills are complementary.
This matters for small organizations that feel pressure to do everything.
Practical tool:
Stop trying to cover every skill yourself.
Instead, ask:
- What am I strong at?
- What drains me?
- Who complements this?
Lean teams succeed when people stay in their lanes and respect each other’s strengths.
Lesson Six: Boards Must Be Clear, Active, and Accountable
Foundations born from personal loss often begin with boards made up of people who cannot say no. That generosity helps at the beginning. It can also limit growth.
Oscar emphasized the importance of evolving governance. Boards need diversity of skill, willingness to work, and clear expectations around time, talent, and treasure.
Practical tool:
Reset board expectations in writing.
Be explicit about:
- fundraising expectations
- time commitments
- skill contributions
- accountability
If needed, transition founding board members into advisory roles and bring in people who fill operational gaps.
Healthy boards reduce executive burnout and increase impact.
Lesson Seven: Financial Support Is Only One Piece
Logistics and Timing Matter Just as Much
The Navigator Program exists because families face cascading challenges. Lost income. Housing insecurity. Insurance delays. Travel costs. Missed work. Siblings left behind.
Oscar shared examples where small interventions prevented devastating outcomes. Covering rent. Accelerating diagnostic scans. Securing trial approvals before eligibility closes.
These moments are not glamorous. They are lifesaving.
Practical tool:
Map the pressure points in your service area.
Ask:
- Where do people lose time?
- Where do delays cause irreversible harm?
- Where does bureaucracy block care?
Then design interventions that act fast at those points.
Timing saves lives.
Lesson Eight: Emotional Neutrality Is a Service
One of the most powerful insights came from naming something often overlooked. Families need someone who can act without emotion when emotions are overwhelming.
Navigator programs work because they absorb stress and translate chaos into steps.
This applies beyond healthcare. Leaders often need neutral third parties to help them think clearly during a crisis.
Practical tool:
Know when to bring in a steady third party.
If emotions are too high to think clearly, do not force clarity. Add support. Perspective returns faster when people feel held.
Lesson Nine: Purpose Heals
But It Does Not Replace Grief
Oscar spoke openly about how the foundation gave him purpose after loss. Not as a replacement for grief, but as a channel for it.
Helping others did not erase pain. It gave it direction.
This matters for leaders who feel pressure to “move on” or “stay strong.”
Practical tool:
Allow purpose to coexist with grief.
You do not need to resolve pain before acting. You need to act with honesty and care.
Helping others does not diminish loss. It honors it.
Lesson Ten: Kindness Is Not Soft
It Is Strategic
The conversation ended where it began. With kindness.
Oscar was clear. Helping other people feels good. It grounds us. It restores meaning. It reminds us we are connected.
This is not naïve. It is practical.
Practical tool:
When overwhelmed, help someone else in a small way.
Send information. Make an introduction. Share a resource. Hold a door. Write a note.
Momentum often returns through service.
Final Reflection: What You Can Do Right Now
You do not need a foundation to help children with cancer.
You do not need a title to create impact.
You can:
- share information
- talk about gaps
- support credible organizations
- advocate in your community
- design systems that assume people are overwhelmed
- lead with clarity and compassion
Hope is not passive.
Resilience is not accidental.
They are built through action, structure, and care.
And sometimes, the most powerful thing you can do is simply help someone hold the weight long enough to take the next step.