Research
Where the science stands today
We fund research, track trials, and maintain a patient registry — so families and researchers both have a clear picture.
Start Here
Four ways to explore our research
Awarded Grants
Research we've funded to date, and what it's aiming to answer.
View grants →Clinical Trials
Studies currently enrolling that may be relevant to your family.
See trials →Patient Registry
Why joining matters, and how your data is used.
Join the registry →For Researchers
How to collaborate with the foundation or request registry data.
Learn more →