Americans with terminal diseases won’t survive more FDA delays 

Treatment breakthroughs mean nothing for rare disease patients if they cannot access them.

When you are living with the death sentence of a terminal illness, it can often feel as though nobody is listening.

This is why I traveled to Capitol Hill this week to visit senators on the Appropriations Subcommittee on Agriculture, Rural Development, Food and Drug Administration, and Related Agencies as they prepare for a hearing to review the FDA’s 2027 $7.32 billion budget request.

RIGHT TO TRY: TRUMP’S DECISIVENESS CAN SAVE CHILDREN WITH RARE DISEASES

The rare disease community and people like me want to make sure senators demand fiscal accountability from the FDA to ensure it uses these resources for its stated mission.

I lost my grandmother and my father to Huntington’s disease, an incurable degenerative neurological disorder that slowly destroys the body and mind.

Seven years after my grandmother died, my father decided to end his own life