Two years without writing. Not by choice. Rather because the gap between what we hoped for and what actually happened became difficult to put into words.

In 2024, when we launched Cure Rett Canada, there was real momentum around gene therapies. Clinical trials were opening, including internationally. It was reasonable to believe that this momentum would translate into concrete access for our daughters.

Today, that horizon has darkened. The United States remains the center of gravity, but the system has become more closed, more focused on its own constraints. And on the side of the companies currently leading Rett syndrome research, there have been no new international openings. No new sites in Canada, or elsewhere.

This situation can be explained in several ways: regulatory complexity, risk management, operational constraints. But we also have to acknowledge a more structural reality: these companies operate within a framework where decisions are heavily influenced by financial considerations. The development of a therapy follows not only a scientific logic, but also one of investment, return, and resource prioritization.

In other words, access does not depend solely on medical need. And as a parent, that changes a lot. Because while these projections are being discussed, our daughters continue to age. And over time, certain abilities are lost. Every regression leaves a mark for which they pay the real price.

The past two years have reminded us of this in very concrete ways — with each hospitalization, each seizure. In those moments, timelines, strategies, and stock markets seem quite insignificant to us as parents. But their effects on our children’s health are very real.

Another element has further complicated the picture: the reception of Daybue. While the United States has approved and promoted this treatment, Europe and Canada have remained much more cautious — some would say skeptical — about the extent of its benefits. The result is uneven access, and an international community moving at different speeds, without a clear consensus.

In the end, we find ourselves between two imperfect realities. On one side, an American system capable of moving quickly, but strongly shaped by financial logic and private insurance companies. On the other, public systems that are more equitable, but also slower to recognize and reimburse these very costly new treatments.

This reality is difficult, but it has at least clarified one thing: we cannot depend on a single system. If the dominant model prioritizes financial logic, then we also need to look elsewhere.

Research exists in other contexts. In China, in Eastern Europe, in Mexico. Teams whose work is often less visible, but very real.

Looking at them means broadening the field of possibilities in a world that has definitively changed. Facing the facts as they are: more limited access, decisions that do not always include us, uncertain timelines — without abandoning the idea that a therapy remains possible in the future.

But that hope must be active.

Restarting this blog today is also about documenting reality as it is, without softening it, and with full scientific independence.

The context has changed. It is up to us to adjust how we move forward.