Hayden's Story

ADVOCATE . CELEBRATE . SUPPORT

Our Mission

Raising awareness and vital funding for PURA Syndrome, a rare genetic condition.

We are dedicated to raising awareness, visibility, and support for families navigating life with disabilities. Guided by advocacy, we bring our community together to foster inclusion and uplift people with disabilities.

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…

Hayden's Story

Fundraising Events

Our first event is in the works — stay tuned as our event committee finalizes details and gains additional sponsorship.

Save the Date: July 4th, 2026

Block Party for Hayden’s 2nd Birthday

Come celebrate with us!

Events

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 positivity and 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

Support our mission by making a donation today and becoming part of our inclusive community and the evolution of treatment for PURA Syndrome.

  • We fundraise to create inclusive events in our community, ensuring those impacted by disabilities know they belong 

  • We donate to organizations supporting research and treatment development for PURA Syndrome. Striving towards a future where a person diagnosed with PURA Syndrome can be given a supportive treatment plan, and ultimately, a cure


Follow along with our journey…

Running for Rare 🏃‍♀️ March. A new month. A new season. A new challenge. Training has begun for the Cascade Lakes Relay and I’m running for rare. I’ve learned that endurance isn’t just about the miles. It’s about app
Today is Rare Disease Day 💜 PURA Syndrome may be rare (800 worldwide). But disability is not. Families like ours live in every neighborhood, attend schools, shop in stores, and dream the same big dreams for our children. What makes the biggest dif
Our Son’s Story: Our Pursuit for PURA Sharing a part of our family’s journey — one that has changed us forever. Our son was diagnosed with a rare genetic condition called PURA syndrome. It’s so rare that many people —
Inclusive parks matter — because for many families, play isn’t always simple. For families raising children with varying abilities, a park can either be a place of connection or a reminder of what feels out of reach. Inclusive spaces lik
🪩 New Year… New Aspirations 2025 was simply a lot... It was a year of new beginnings for our family. Having a child diagnosed with a rare disease led us in a different direction than we could have ever imagined. It was a year of searching&he
✨ Happy Holidays ✨ Our holidays have been filled with nonstop music and there is nothing better than the gift of Hayden learning how to clap along to all our tunes. When the family is dancing around the house, this boy loves the energy and laughs at
Explorer Mini, Permobil Foundation During a PT appointment shortly after Hayden turned 1, we were introduced to an Explorer Mini, a powered mobility solution that facilitates self-initiated movement and early exploration for children 12 – 36 m
Mixed Sleep Apnea, Adenotonsillectomy & PURA Syndrome How we were able to obtain a diagnosis for mixed sleep apnea… A referral from our primary care physician to a neurologist. Our neurologist referred us to a sleep study clinic. Results
PURA Syndrome Awareness Day! Hello PURA community, We are recognizing our 1st PURA Syndrome Awareness Day this year after receiving Hayden’s diagnosis this past March. Our son Hayden is 16 months old and the youngest of our 3 kiddos. Hayden