Personal urgency.
Scientific focus.

Where it started

The TTC19 Research Initiative began with our children, William and Scarlett. Both live with TTC19-related mitochondrial disease, an ultra-rare condition affecting mitochondrial Complex III.

Like many families facing a rare diagnosis, we quickly discovered that there were far more questions than answers. There is no established disease-modifying treatment for TTC19, very little natural-history data and only a small body of research for families and clinicians to draw on.

Why the Initiative exists

As we learned more, our focus became bigger than simply searching for answers for our own family. We wanted to help build some of the research infrastructure that TTC19 currently lacks: better organised evidence, stronger natural-history data, useful disease models, research collaboration and a clear route for promising ideas to be tested properly.

William and Scarlett are the reason this began, but the Initiative is not only about them. It is for every family affected by TTC19, including those we have not yet found, and for the researchers who may one day help change what this diagnosis means.

A family-founded initiative grounded in science

We are not a laboratory, specialist clinic or biotech company, and we do not claim to have a treatment. Our role is to organise evidence, identify unanswered questions, create collaborations, support credible research and keep TTC19 visible enough to attract sustained scientific attention.

Rare shouldn’t mean forgotten.