Advocating with Purpose: Volunteering with CTNNB1 Connect and Cure

I had the incredible opportunity to represent CTNNB1 Connect and Cure at the Global Genes Rare Disease Summit, volunteering at our booth to share stories, build connections, and raise awareness for a cause close to my heart. As a rare disease mom and founder of Wish Wear Accessories, supporting the CTNNB1 community isn’t just part of what I do—it’s who I am.

Standing at the booth surrounded by passionate advocates, researchers, and families from around the world, I was reminded of the power of visibility and community. Every conversation was a chance to spark understanding, offer hope, and help others see the magic in our mission: accelerating a cure for CTNNB1 Syndrome while uplifting the incredible kids and families affected by it.

Our presence at the Global Genes conference was part of a bigger story—one that’s beautifully captured in the latest 2024 CTNNB1 Connect and Cure Impact Report. This report reflects our growing reach, scientific progress, and unwavering dedication to collaboration. From funding research to supporting families on their rare journey, our momentum is real—and it’s personal.

📘 View the full 2024 Impact Report here:
CTNNB1 Connect and Cure 2024 Impact Report (PDF)

"Volunteering at the CTNNB1 booth was more than a task—it was a chance to connect, to listen, and to remind others (and myself) that we’re not alone. We’re part of something bigger, and we are making progress—together."

To every family, researcher, and rare disease warrior who stopped by our booth—thank you. Your presence matters. Your story matters. And the future we’re building together is one filled with hope.

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