Letter from Our Founder: Rare Disease Day 2026—We’ve Never Been Closer

Every day is Rare Disease Day in our house.

It’s woven into our routines—the therapy appointments, the medication schedules, the quiet calculations before something as simple as a family outing. It lives in the dreams we hold for Charlotte and Cooper.

And yet, Rare Disease Day 2026 feels different.

It feels like momentum.

It feels like we are closer than ever to life-changing treatments.

Rare Disease Day 2026: Building on a Powerful Foundation

Feb 28th is International Rare Disease Day (or, Feb 29th, the “rarest” of days, when it occurs). One of the gifts of Rare Disease Day 2026 is to come together to celebrate how much this entire rare disease community has built together.

When Doug and I first began searching for answers for our children, we were stepping into a community already filled with passionate researchers, determined families, and advocates who refused to accept “rare” as a reason to move slowly. We are standing on the shoulders of that dedication.

What feels different now is the speed and scale of collaboration.

Earlier this year, I attended the American Epilepsy Society meeting and left deeply inspired. The science was bold, but what moved me most was the partnership between families and researchers. We were engaging in deep conversations, sharing data, and helping refine research questions.

When families are part of the research process, progress accelerates. It becomes more focused, more urgent, and more connected to real life. That shift is powerful—and it’s moving potential treatments forward faster than ever.

Rare Disease National Momentum

Rare Disease Day 2026 also comes at a time when rare disease research is gaining meaningful national attention.

Platforms like CNBC Cures are bringing rare disease innovation into the spotlight. Policymakers are paying attention. Investors are recognizing that rare disease science is not only urgent—it’s transformative.

The reauthorization of the Rare Pediatric Disease Priority Review Voucher program is one example of that forward movement. It strengthens the path for companies developing therapies for rare pediatric conditions and helps ensure promising treatments continue advancing.

For families like ours, that infrastructure is vital to our progress.

Rare Disease Day 2026 at the FAM177A1 Research Fund

At the FAM177A1 Research Fund, we feel this forward motion every day.

We see it in new research partnerships.

We see it in advancing gene therapy efforts.

We see it in drug repurposing studies designed to fast-track potential treatments.

The scientific curiosity around FAM177A1 is growing. The collaboration is deepening. And the path toward treatments feels more defined than ever.

Because of you, we are not standing still. We are accelerating treatments for Charlotte and Cooper—and for every FAM FRND.

Rare Disease Day has always been meaningful in our home. But Rare Disease Day 2026 feels like a moment of visible forward motion—a moment where years of dedication, advocacy, and scientific rigor are converging into real opportunity.

From our family to yours, thank you for being part of this movement. You remind us every single day, but especially on Rare Disease Day, that joy is part of the cure.

With deep gratitude,

Jill Hawkins

Founder & President

FAM177A1 Research Fund

P.S. If you’re looking for a joyful way to fuel life-changing research, FAM JAM is right around the corner. We would love to celebrate with you. 💙