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.