ADVOCATE . CELEBRATE . SUPPORT
Our Mission
Raising awareness and funding for PURA Syndrome, a rare genetic condition.
This nonprofit is led by a family dedicated to enhancing the quality of life for their child with PURA Syndrome, a rare genetic condition without current treatments, while embracing a lifelong journey grounded in resilience, community, and disability pride.
PURA Syndrome + Hayden’s Story
First described in medical literature in October 2014, PURA Syndrome is a rare genetic disorder that affects neurodevelopment.
With roughly 850 individuals diagnosed worldwide.
Quick Facts:
PURA Syndrome arises when there is a genetic mutation affecting one of a person’s two copies of the PURA gene
The PURA gene encodes for a protein, pur-alpha, which is expressed in all tissues including the brain, muscle, heart, and blood
A PURA mutation impacts nearly every aspect of daily life; motor skills, cognition, language, and emotional development
Because there is currently no cure, families rely on lifelong therapies, care, and community support—making awareness and research critical
Our rare community offers support through organizations like the PURA Syndrome Foundation, who offer various resources to families diagnosed and Jack's Tomorrow, dedicated to raising funds for scientific studies aimed at identifying a treatment and ultimately a cure
Pursuit for PURA is committed to making a meaningful impact through fundraising and community connection, uniting people and sparking joy along the way.
PURA impacts everyone differently. Learn about Hayden’s story with PURA Syndrome and why we began this nonprofit…
Fundraising Events
Come celebrate with us at our first event!
4th of July Block Party with Purpose
Save the Date: July 4th, 2026
Our Story
This nonprofit originated from the feeling of not knowing how to support my child and his future. I knew that these feelings of fear and doubt were not ones to let simmer and grow.
To combat these feelings with action, I am compelled to share our journey with family, friends, and our community. Bringing awareness and support to those affected by disability allows us to become part of one another’s stories and being together makes all the difference.
McKenzie Roller
Mother of Hayden + Founder of Pursuit for PURA
How You Can Help
By making a donation today you play a part in Hayden’s community and the evolution of treatment for PURA Syndrome. Your donations help support:
Community-driven fundraising events for connection amongst those affected by disability
Organizations in the PURA community dedicated to finding treatments for PURA Syndrome
Follow along with our journey…
