For families
If you just found out, you are not as alone as you feel.
I am Misha's father. When we got his diagnosis, we had never heard of STRC either, and there was no one to call. If you are reading this the week you found out, this page is the thing I wish someone had handed us.
You have never heard of this gene. Neither had we.
The hardest part at the start is not the audiogram. It is the feeling that you are the only family in the world with this, that your child's condition is invisible to everyone around you. That feeling is real, and it is also wrong. There are more of us than the silence suggests, and finding each other is the first thing that helps.
What is actually true today
Not the worst thing you read at 2am. This.
The science is tractable
STRC hearing loss comes from a single gene. That is the kind of problem computation and gene therapy are built for, not a lost cause.
Your data stays yours
The registry we are building is family-controlled and IRB-approved. You own your records and consent to each use. We will never sell your data, because it is not ours to sell.
Someone is working on it
That is the whole reason this foundation exists. You are not waiting alone for a system that forgot you.
Honest hope, not a promise
There is real, early science for this exact gene. In 2026, a gene therapy restored hearing to near-normal levels in a mouse model of STRC. That is not a cure, and I will not pretend it is. It is a reason to move now instead of waiting. And it points at something concrete you can do today, which is the next thing on this page.
The most useful thing you can do
The rare-disease research is clear on one point: families who take a concrete action feel less powerless, and the action genuinely moves a future treatment closer. Here is yours.
Add your child to the registry
It takes about ten minutes, and it is the single most useful thing a family can do to make a future trial possible. It is also, quietly, the thing that helps you feel less powerless.
Find the others
Peer-parent introductions, a community call, and newly-diagnosed guidance written for parents, not clinicians.
Tell us what matters
Family input decides which research gets funded first. You know what a good day looks like better than any committee.
Not STRC? You are still in the right place.
Right now our capacity goes to STRC, because it is the case we know from the inside and can move on first. But nothing about the pipeline, the registry, or the community is specific to one gene. If your child has a different rare disease, you are welcome here, and there is a real role for you.
We are recruiting family ambassadors
An ambassador is a parent who leads a branch for their own child's disease: the newly-diagnosed guide, the family network, and the call on what gets researched first. You bring the lived expertise and the community. We bring the research pipeline, the registry infrastructure, and the fundraising model. That is how one rare disease becomes many.
Start a branch for your diseaseWrite to me
Whether your child carries STRC or a variant no one has named yet, I want to know you exist. Not as a data point, but as a family we are building this with. The registry and the community start with you.