About
About Rare Break
Rare Break advocates for, mobilizes, and funds AI-driven genetic therapies for children whose diseases are too rare to attract pharmaceutical investment.
A note from Jojo's parents
Why we started
After back-to-back hospital stays with no answers, my husband and I started searching for them ourselves. Gemini pointed to Jojo's rare disease before any doctor suspected it, and AlphaFold is the only reason we can see her mutation.
Then we learned there was no cure, and that rare diseases are a neglected field that don't attract traditional drug development. As parents, we couldn't just accept that. We started Rare Break to build a path forward for Jojo, and for the families who come after us: bring the right scientists together, fund the work, and share what we learn.
Jojo's parents, and Co-Founders
Hear more about the emotional weight of our journey and the fight for Jojo's cure on the Model Minority Moms podcast.
Listen on Spotify →What we do
Each therapy becomes a playbook for the next
We recruit leading researchers, bring them the evidence, and fund the work.
Advocate
We make the case to leading researchers for taking on diseases that are too rare for drug companies, and bring them the evidence to start.
Mobilize
We bring together the team each therapy needs, from gene-editing labs and mouse model experts to manufacturers.
Fund
We raise money from families, communities, and employers, and direct it to the work that moves each therapy forward.
Our name comes from what we do: turn the rare breaks in our genes, the single mutations behind rare diseases, into medical breakthroughs.
Our first project
Hope for Jojo
Hope for Jojo is developing a gene therapy for SCN8A. Because it is a complex neurological condition, there was initial hesitation. Instead of giving up, we used AI tools like Gemini and AlphaFold to synthesize the literature and build the scientific case ourselves. We presented our findings to leading scientists like Dr. Fyodor Urnov and Dr. Stephan Sanders, who agreed Jojo was a suitable candidate. With their vetting, we secured essential funding through a program with the Medical Research Council. Jojo became one of the Innovative Genomics Institute's first neurological cases, driving the door open for them to take on dozens more.
Fiscal sponsor
Hope for Jojo is fiscally sponsored by Rare Village Foundation, a 501(c)(3) tax-exempt organization. Donations are tax-deductible as allowed by U.S. law. Please keep your emailed receipt as your official record.
Want to get involved?
We'd love to hear from researchers, families, and volunteers. Email info@rarebreak.org.