Our Mission
Pursuit for PURA’s mission is to raise awareness of a rare genetic condition that affects neurodevelopment known as PURA Syndrome. We fund PURA Syndrome causes supporting developing treatments and to local programs currently in place supporting those facing challenges in their community due to disability.
Turning our pursuit into action through advocacy for PURA Syndrome and organizing collaborative gatherings with purpose-driven celebrations, we strive to spark connections and strengthen our community's support system for those impacted by disability.
What is PURA Syndrome?
PURA Syndrome is a rare genetic disorder that affects neurodevelopment. PURA syndrome arises when there is a genetic alteration affecting one of a person’s two copies of the PURA gene. It was first described in medical literature in October of 2014.
As of 2025, there are about 750 individuals with PURA Syndrome worldwide. As genetic tests become more affordable, testing becomes more accessible and more people will be identified.
Fundraising Events
We are in full planning mode for our 1st event to take place July 4th of 2026! Stay tuned as our event committee pencils out the details and gains additional sponsorship so we can throw an EPIC block party celebrating Hayden’s 2nd birthday…yes his birthday is on the 4th!
Save the date and celebrate with us!
Fund Hayden’s Future
This nonprofit began from a feeling of not knowing how to support my child and his future. I knew this was not the feeling to simmer with and let grow. Bringing awareness of a rare genetic condition and sharing this with my family, friends, and community is my way out of a feeling of doubt. Bringing a feeling of love and support to those affected by disability allows us all to be a part of each-others stories, not just those with the disability…
Pursuit for PURA funds other foundations supporting developing treatments and to local programs supporting those facing challenges in their community due to disability.
Our hope is that the money we raise for research allows us to strive towards a future where a person diagnosed with PURA Syndrome can be given a supportive plan, including treatments as necessary and ultimately a cure. Our efforts are to contribute to those organizations who can make a difference in people’s lives faced with challenges from disability, removing barriers and building accessible paths forward.
As of today, a diagnosis of PURA Syndrome is where a family begins and ends with this rare disease. Support our mission by donating today and be a part of PURA’s evolution and our communities inclusivity.
~McKenzie, Mother of Hayden + Founder of Pursuit for PURA
