Your contributions not only make a difference, but help us celebrate along the way…

Hayden Roller,

PURA Syndrome Advocate

Current Campaign + Upcoming Event

Hayden Turns 2! Celebrate & Donate to our, “4th of July Block Party for a Purpose”

Benefiting Pursuit for PURA

Pursuit for PURA is celebrating it's very own Hayden Roller's 2nd birthday. 🎂 Celebrate with us by funding a great cause!

Pursuit for PURA was established in support of our son Hayden Roller who was diagnosed with PURA Syndrome. What better way to celebrate a birthday than to join together to make a positive impact in the rare genetics community.

We will be hosting a birthday bash in the form of an EPIC block party on the 4th of July, summer of 2026 in Milwaukie OR (stay tuned as we will be sharing more details as this date approaches). All donations leading up to this date will support this fundraising event and our mission of celebrating for a purpose driven cause.

Our 1st fundraiser will support research into PURA Syndrome, a rare genetic condition affecting brain function and motor control. Proceeds will be donated to Jack's Tomorrow, an organization dedicated to funding research to find a treatment and ultimately a cure for PURA Syndrome.

As Hayden's family, we are dedicated to encouraging everyone we know to make a significant impact through our community-driven fundraising efforts. We thank you for your trust, support, and love you show us.

Your friend,

~McKenzie, Mother of Hayden + Founder of Pursuit for PURA

Frequently Asked Questions

  • Yes. Our EIN is 39-4882762.

  • This is a small nonprofit ran by a mother who’s son is directly affected by PURA Syndrome. After administrative expenses are paid for, all proceeds go directly to the selected cause of each event/campaign we fundraise for. We are dedicated to encouraging everyone we know to make a significant impact through our community-driven fundraising efforts and will share our impact after each event and how our contributions are distributed. We thank you for your trust, support, and love you show us.

  • We would LOVE your support. Please reach out to us to share how we can partner with you.

  • Yes. We happily accept volunteers and all their ideas to help us connect with our community. If you would like to share with us how you can contribute to our organization or simply want to learn more about ways to get involved, don’t hesitate to reach out.

  • Yes, please reach out to us to provide more information and to coordinate necessary arrangements.

  • We would be grateful for your loved one to be apart of our mission.