What Love Asks of Science: How Project CASK Is Building the Path to CASK Treatments
Project CASK is featured in the new X-linked disorders edition of RARE Revolution Magazine, telling the story of how families are helping build a global research ecosystem to advance treatments for CASK gene disorders.
“Loving our children exactly as they are does not mean asking less of science.”
That idea sits at the heart of What Love Asks of Science, a new RARE Revolution feature written by Project CASK Co-Founder Hitomi Kubo.
The article begins with three daughters — Esme, Rooney and Shea — and the mothers who turned their love into action to change what is possible for people with CASK gene disorders. Their experiences span a recent diagnosis, years of caregiving and the loss of a child, and together they have helped shape the questions at the center of Project CASK’s work.
But it is also the story of what has grown around them: a global effort to turn promising CASK science into a coordinated path toward treatments.
Building the CASK research ecosystem
When Project CASK launched in 2023, important CASK gene research was underway, but much of it was developing independently within individual laboratories. Project CASK began connecting the pieces.
Today, we work across the therapeutic development pathway, bringing together families, scientists, clinicians and translational partners while investing in the research, tools and infrastructure needed to move CASK science forward.
Our goal is bigger than funding individual studies. It is to create an ecosystem capable of identifying promising science, testing it rigorously and giving the strongest therapeutic approaches a real path forward.
A global effort powered by families
Families are central to that ecosystem. They participate in studies, share medical records and biological samples, raise funds, translate information and help researchers understand what meaningful change should look like.
Through the Liocorn Roster, more than 550 people with CASK have been mapped across 54 countries. In an ultra-rare disorder, that global participation matters. Who is represented helps determine what science can see.
This November, many parts of that growing ecosystem will come together at ROAR 2026: The CASK Conference in Houston, bringing families, scientists, clinicians and partners together to share emerging science, strengthen collaboration and align therapeutic development with family priorities.
What love asks of science
At its heart, the RARE Revolution feature asks a larger question. What should we ask science to make possible for the people we love?
For Project CASK, the answer is not one study, one technology or one therapeutic bet. It is to pursue the strongest science with urgency and discipline, build the infrastructure the field needs, and bring the right people and resources together to move promising approaches toward treatments.
We are building the CASK ecosystem so that promising science has a real path toward treatments.
That is what we are here to do.
Read the full story
Read “What Love Asks of Science: How Project CASK is building a global research ecosystem to advance treatments for CASK gene disorders” in the X-linked disorders edition of RARE Revolution Magazine.
If you are part of the CASK community, we hope you will share the story and tell people who you are sharing it for.
Thank you to the RARE Revolution Magazine team for shining a light on CASK and our Liocorns.
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