In brief
In time, CureTAOK1 will be supported by strong advisory boards — scientific and clinical — bringing together researchers and physicians working on the TAOK1 gene, neurodevelopmental disorders, and genetic therapies. We will establish them formally along with the registration of the foundation. This page is where we will present their members; for now, we explain why such boards exist and where we stand today.
Why is an advisory board so important?
The foundation is made up primarily of parents — we bring determination, organization, and first-hand knowledge of everyday life with TAOK1-NDD, but we are not scientists. Meanwhile, the decisions we will be making are deeply substantive in nature: which research projects to fund, how to design the patient registry and the natural history study, how to evaluate emerging therapeutic directions, how to safeguard the scientific accuracy of the materials published on this website. For that, independent, expert eyes are needed.
The best foundations working on rare diseases are built on exactly this model: a board made up of families sets the goals and raises the funds, while a scientific and clinical advisory board makes sure that every substantive decision stands up to the current state of knowledge. We intend to follow precisely this path.
Where are we today?
Already now, several scientists and physicians from different countries kindly support us — they review our materials, help us understand the literature, and suggest directions for our work. We are deeply grateful to them. Once the foundation is formally established, we will transform this informal collaboration into regular advisory boards with a clearly defined role and principles of independence and transparency. The membership of the boards will be published on this page.
Are you a scientist or a physician? We would love to hear from you
If you work in genetics, neurology, developmental neurobiology, gene therapies, or the care of patients with neurodevelopmental disorders — and would like to support our mission with your expertise — write to us at contact@curetaok1.org. We will gladly tell you about our plans and think together about what form of collaboration makes sense. More information coming soon.
This content is for informational purposes only and does not replace medical advice. Last updated: August 2026.