Naming the gap

This Sunday is Mother’s Day (you’re welcome for the reminder).

What you may not know is that last Sunday was Bereaved Mother’s Day. It’s not widely talked about. Like most things related to hard things, it exists quietly – recognized deeply by those who need it, and largely invisible to everyone else.

I hate that I know it exists. And I’m also deeply grateful that it does.

That’s the paradox of access: you don’t fully understand the value of something until you need it. And when that moment comes, it shouldn’t be hard to find.

At Rona’s FUN LAB, we’ve been thinking a lot about that gap, especially in hospital settings, where families are often navigating rare diagnoses with little guidance beyond the immediate medical plan.

Today, I’m proud to share something we’ve been building: a Rare Disease Resource Directory for hospital staff. It’s designed to be a practical, go-to tool for care teams so that when a family receives a diagnosis, especially a rare one, they can be connected to meaningful support in real time.

The inspiration came from a conversation with another Aplastic Anemia mom. When Rona was diagnosed, I had a starting point. Through prior work, I already knew about the Aplastic Anemia & MDS International Foundation (AAMDSIF), and within a week we had access to a support group, community, and additional medical insight.

She had none of that.

If your child is diagnosed with leukemia, you’re often given a comprehensive support packet from organizations like the Leukemia & Lymphoma Society (LLS) at admission. There’s infrastructure. There’s guidance. There’s a path forward.

But for many rare conditions, that ecosystem simply doesn’t exist or it’s incredibly hard to find.

This directory is our attempt to help close that gap.

We’re building a centralized, evolving resource hub that includes:

• Disease-specific foundations and advocacy organizations

• Financial assistance programs (travel, lodging, treatment support)

• Mental health and grief support resources

• Peer support and community networks

• Practical supports like adaptive clothing and accessibility tools

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But it’s not finished. And it’s not meant to be built alone.

If you know of organizations that should be included — whether national or local, clinical or community-based — we’d love for you to contribute. And if you work in pediatric care, we’d love to connect about how this can support your teams and the families you serve.

You can explore and contribute here: ronasfunlab.org/resource-directory

Because access shouldn’t depend on luck, prior knowledge, or who you happen to know.

It should be built into the system, especially for families who are already carrying more than enough.