About MyGNAO1
Built by a father. For every family navigating GNAO1.
Aisha was born on the fourth of April 2025.
Her birth was ordinary by every measure. We left the hospital on her second day of life. We were first-time parents, full of anticipation, with a home waiting for us and a celebration planned.
That evening, while the decorations were still up, Aisha turned blue.
We rushed to the emergency room with no understanding of what was happening. Neither did the team that received us. She was admitted to the PICU, placed in an incubator, and started on Phenobarbital for seizures of unknown origin. What was planned as a one-week visit to Jordan became months.
In the weeks that followed, I knocked on every door I could find. Neurologists, pediatricians, specialists of every kind. Tests, videos, second opinions. Six weeks after a whole genome test was requested, the result came back: GNAO1.
I had never heard of it. Neither had the doctor sitting across from me — who Googled it in front of us and told us this was the first recognized case in Jordan. He could not answer most of our questions. No one could.
The data was scarce. Research papers written for researchers, not for parents. The internet offered very little that a father sitting in a hospital corridor could actually use. Until I found a Facebook group — GNAO1 Family — and for the first time felt something close to relief. Real families. Real experiences. A place where the questions I had were questions others had lived through.
The disorder is rare and unpredictable. It presents differently in every child. We held on to hope, as parents do.
Aisha's journey has been difficult. Medications, hospitalizations, setbacks. On the 10th of December 2025, she was admitted to the ICU following a severe seizure episode. As of the writing of these words, she remains there.
It was in those hours at her bedside that I made a decision. I opened my laptop and began building MyGNAO1.
What did not exist
GNAO1 is rare enough that most doctors encountering it are encountering it for the first time. Families navigating this diagnosis are largely on their own — searching for information that does not exist in accessible form, making decisions without data, and unable to find other families nearby.
What I needed, and could not find, was a single place where families could find each other regardless of where in the world they are, treatment experiences could be shared in structured and searchable form, and researchers could eventually find the data they need to move faster. That platform did not exist. So I built it.
What MyGNAO1 is
MyGNAO1 is a community platform built by a GNAO1 parent, for GNAO1 families.
It is a place to find others who understand. To share treatment experiences honestly — what worked, what did not, and what remains uncertain. To see that you are not alone on a map of a world where this condition is scattered and rare. To access structured information without needing a medical background to understand it.
MyGNAO1 is not a medical authority. It does not offer advice or make recommendations. It holds space for families to share their own experiences and find each other across borders.
What we believe
Privacy is not a feature — it is the foundation.
Every family controls what they share, with whom, and when.
Honest data is more valuable than polished data.
"Too early to tell" and "it didn't work" are as important as success stories.
Community is not optional for rare disease families.
It is a clinical resource in its own right.
A cure is possible.
We have seen it happen for other rare diseases. Data, community, and research access are how it begins.
Where we are going
MyGNAO1 is built in phases.
The first phase establishes the foundation: a community where families can connect, share experiences, and access information in a safe and private environment.
The next phase transforms that community into research infrastructure — structured, longitudinal, family-governed data that can be made available to researchers studying GNAO1. Not sold. Not exploited. Shared, with consent, in service of finding answers.
The long-term vision is a platform that serves as the default gateway for every family navigating a GNAO1 diagnosis — and a trusted data source for every researcher working toward a treatment.
This platform has no fixed ceiling. It will grow as far as it needs to.
An open invitation
MyGNAO1 is currently built and maintained by one person.
If you are a family affected by GNAO1 — use it, share it, and tell me what it is missing. Your feedback will shape every future version of this platform.
If you are a researcher, clinician, or writer with something to contribute — there is a place for you here.
If you have skills to offer — in engineering, design, content, operations, or community support — I would welcome the company.
This is an open invitation, with no conditions attached.
Mahmoud AlSharif
Founder, MyGNAO1