Español
BluebonnetGenome Foundation
Menu

About us

Born from lived experience

Bluebonnet Genome Foundation is a Texas foundation started by a family that knows the road of rare genetic disease firsthand.

Our story

Why we started

Bluebonnet Genome Foundation was founded by a family that knows rare genetic disease from the inside.

Our founder, Aisha Stephens, is a rare disease researcher and a mother of five. Two of her children live with rare genetic conditions.

She knows the long search for a diagnosis, the fear of waiting on test results, the exhaustion of one appointment after another, and the financial and emotional strain a family carries when no one can tell you what comes next.

As a researcher, she also knows how much a diagnosis can change for a child and a family.

Bluebonnet Genome Foundation exists so that no family walks that road alone.

  • Our programs will connect families with the specialists who understand their child's condition, wherever in the world those specialists are.

  • They will provide practical relief: help with a mortgage payment, a utility bill, co-pays, transportation, therapy costs, and respite so parents can rest.

  • We will fund research and university grants that lead to answers and treatments.

  • And we work to change how genetic conditions are diagnosed and treated, while raising awareness of what medical parenting truly demands.

We believe every family deserves answers, support, and community. This work is done to the glory of God, built to last, and built for everyone who needs it.

A mother and her two young children smiling outdoors

Where we are

Our first priorities

Right now we are building the foundations the rest of this work stands on: partnerships with the clinics, universities and organizations already serving Texas families, the technology families will use to reach us, and the case for the Lone Star Genome Act.

We'll post updates here as each program opens. To hear about them first, sign up for updates.

See our programs Contact us

Board of directors

The people behind Bluebonnet Genome Foundation

  • Aisha Stephens

    Aisha Stephens

    President and Founder

    A mom, a medical student pursuing a career in pediatrics with a focus on neurology and genetics, and a rare disease researcher. She knows that behind every diagnosis is a parent searching for answers, and she leads Bluebonnet Genome Foundation with the compassion of a mother and the knowledge of a clinician.

    She is also a Turner syndrome advocate, host of the podcast Scattered Stethoscope, and committed to inclusive research that makes genetic answers accessible to every Texas family.

  • Kyle Stephens

    Kyle Stephens

    Vice President of Operations

    A dad to children living with genetic conditions, a U.S. Marine Corps veteran, and a business and finance professional. He knows what it means to fight for answers for your child, and he leads the systems and logistics that turn Bluebonnet Genome Foundation's mission into action for every family.

    His company, StephensCode LLC, is partnering with Bluebonnet Genome Foundation on its technical work.

  • Eric Huss

    Eric Huss

    Secretary

    One of the longest-standing supporters of Bluebonnet Genome Foundation. With a background in law enforcement and security, and a degree in Business Administration concentrating in Global Leadership and Human Resources, he oversees records and governance for Bluebonnet Genome Foundation.

    He is currently pursuing his master's degree at the University of Houston.

We believe every family deserves answers, support, and community.

What we believe

How we'll do this work

  • Families first

    Every program starts with what families actually need, and families help shape it.

    Before we open a program we ask parents who have lived it what would have helped them most, and we build to that answer instead of to what looks good on paper.

    Families help set the rules for who qualifies and how help reaches them, and we keep asking after a program opens, because what a family needs in the first month after a diagnosis is not what they need a year later.

  • Honest about what's possible

    We talk about answers and paths to treatment. We don't promise cures.

    Rare genetic conditions are complicated, and most of them still have no approved treatment, so we will never tell a family that a test or a specialist will fix what their child is facing.

    What we will do is say plainly what is known, what is being studied, and what we can and cannot help with, even when the honest answer is that no one knows yet. Families have heard enough false hope.

  • Privacy by design

    Genetic information is personal.

    We collect only what a family's care or a program actually requires, we ask permission first, and we explain what we are asking for and why before a family shares anything.

    What we hold stays in the United States. It is never sold, never shared without permission, and a family can ask us to correct or delete it at any time. Read our privacy policy.

  • Partners, not duplicates

    Where another group already does something well, we point families there and support that work.

    Texas has strong medical centers and national organizations who have been helping families for years, and a new foundation duplicating them helps no one.

    We look for the gaps instead: the costs no one else covers, the families outside the big cities, and the support that stops at the clinic door. See the groups we recommend.

Where would you like to go next?