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I’m tired.

Like, really tired. The kind of tired that doesn’t go away after one good night’s sleep. My body is currently sending me the bill for three days of showing up fully — every session, every conversation, every handshake — in Lagos heat and humidity, running on adrenaline and purpose.

Warriors will know exactly what I mean.

But I’m also more motivated than I’ve been in a long time. And that’s saying something.

The Room

This past week I was in Lagos, Nigeria representing Raremark Foundation at the ALSAC/St. Jude Global Sub-Saharan Africa Foundations Workshop. 34 foundations. 14 countries. One room.

Raremark was one of only 7 Sickle Cell Disease foundations there. Seven. Out of thirty-four.

I sat with that number quietly for most of the workshop. Not bitterly — just honestly. SCD is the most common genetic disorder in Sub-Saharan Africa and we were seven. There is still so much ground to cover.

But within those seven, something happened that I wasn’t expecting.

Neema Mohamed. Bone and Blood Foundation, Tanzania. Eunice Owino. Sickle Cell Uhuru Trust, Kenya. And me.

Three East Africans. Three Warriors. Three people who looked at this disease from the inside and said — okay, if nobody is going to fix this, we will.

I went to Lagos hoping to find my people. And there they were. Again. I had the chance to build on the friendship we fostered last year in Nairobi — and that meant more than I expected it to.

We bantered. We laughed. We vented about the same things in the way only people who truly get it can. And in between all of that, we talked seriously about what it would look like to work more closely together — as organizations, as advocates, as a regional force.

Breakfast

It was during breakfast on one of the mornings that it hit me again.

It’s hit me before — over the years, more times than I can count. But in Lagos, sitting at that table, surrounded by people fighting to change the numbers, it landed differently.

20,000 children are born every year in Uganda with Sickle Cell Disease.

80% of them will not live long enough to see their fifth birthday.

I am 34 years old.

I have lived with this disease my entire life. And I am — genuinely, uncomfortably — privileged to still be here. That is not a dramatic statement. That is just the math.

ALSAC’s CFO Kera Getter said something during the workshop that I keep coming back to.

“No child deserves to die in the dawn of their life.”

Simple. Devastating. True.

I thought about every Warrior who never got the chance to grow up and fight back. And I thought — this is exactly why we cannot slow down.

Lived Experience is a Superpower

Daniel McKenzie of KidzCan Zimbabwe said something during the workshop that stuck with me.

“We have lived experience and we should lean on that more when pitching for grants and donations.”

He’s right. And it’s something I think about a lot as a Warrior who also runs a foundation. There are days when I lead with the data and the strategy and the governance frameworks — all necessary, all important. But there is something that no report can replicate. I know what this disease feels like from the inside. I know what it costs. I know what it steals.

That is not a weakness to manage around. That is the pitch.

Coming Home

The journey back to Entebbe was rough. My body made sure I knew it. Pain. Exhaustion. That specific kind of drained that only Warriors understand — where you’ve been running on adrenaline for days and your body waits until you’re finally still to collect what it’s owed.

But I came home lighter in spirit. And with a clearer head.

Sessions on financial governance and strategic partnerships gave me a roadmap I didn’t know I needed. The kind of clarity that comes not from reading about best practices but from sitting in a room where people who have figured it out are willing to share. I came back to Uganda thinking differently about how we build Raremark — not just what we do, but how we sustain it.

None of that happens without the people who made the room possible. A sincere thank you to Piera Lesure, Kera Getter, Maya Smith, and the entire ALSAC team for hosting us with such intentionality and warmth. Raremark is grateful to be in this partnership and I don’t take it lightly.

Because sometimes you need to sit in a room full of people carrying the same weight as you — and realize that the weight is worth carrying.

The work continues. For every child who deserves to see more than just the dawn.