What if every PURA family, friend, advocate and supporter came together—not just to raise awareness, but to accelerate progress?

Together for PURA is more than a fundraising campaign. It is a movement rooted in community, hope, and action. Together, we are advocating for what our families need most: continued research, meaningful support, and a future filled with possibility for individuals living with PURA Syndrome.

This October, we enter our 12th year since PURA Syndrome was first described in medical literature. In those early days, many families spent years—sometimes decades—without a diagnosis, without answers, and without a community. Today, because of collective effort, our global PURA community has grown to more than 800 identified individuals, and together we’ve made important strides in both research and family support.

But there is still so much work to do.

That is why we are launching the 2026 Together for PURA Fundraising Campaign—to build on our progress and push forward with purpose.

Our goal is to raise $300,000 to support critical research, empower families, and strengthen advocacy efforts worldwide. Reaching this goal requires all of us:

families and extended families,
friends and neighbors,
local businesses and corporate partners,
restaurants, creators, and community leaders, and
everyone who believes that rare does not mean alone.

When we come together, our impact grows exponentially.

A defining moment in this campaign will be October 23 — PURA Syndrome Awareness Day – when we will rally our community to raise awareness, share stories, and inspire collective action and giving. This day reflects not only how far we’ve come, but what’s possible when we move forward together.

We can do this. And you can be part of it.

By joining Together for PURA 2026, you are accelerating research, supporting families today, and lighting the path toward a brighter future tomorrow for the PURA community.

Together, we are stronger. Together, we move forward.

About PURA Syndrome

PURA Syndrome is a rare genetic disorder that affects neurodevelopment. It is caused by a change in one of a person’s two copies of the PURA gene, located on chromosome 5 (5q31.3). The PURA gene provides instructions for making a protein called pur‑alpha, which plays a critical role in brain development and is active throughout the body, including the brain, muscle, heart, and blood.

Disruptions to this gene can affect learning, movement, communication, and overall development. While PURA Syndrome is rare, the strength of the PURA community is powerful—and growing.

Learn more about PURA Syndrome and our mission at purasyndrome.org.

Together for PURA 2026

Empowering families, advancing research

Team Leaderboard

Team Members