WHAT IS
RETT SYNDROME?
Rett syndrome is the rare neurological disorder that Piper Caster lives with every single day. Every mile Peter and Piper run together is a mile run for awareness, research, and hope.
UNDERSTANDING RETT SYNDROME
This video explains what Rett syndrome is, how it affects children like Piper, and why awareness matters.
THE REALITY OF RETT SYNDROME
Making it one of the rarest neurological disorders in existence.
Research is ongoing, but families like Piper's live with this reality every day.
Most children develop normally before symptoms appear — making the diagnosis devastating.
WHAT DOES RETT SYNDROME LOOK LIKE?
Children with Rett syndrome often lose the ability to use their hands intentionally, replacing voluntary movements with repetitive hand-wringing or squeezing.
Many girls with Rett syndrome lose the ability to speak, though they often retain the ability to communicate through eye gaze and expression.
Walking and balance are significantly affected. Many individuals require mobility aids or wheelchairs — like the racing chair Peter pushes Piper in during every race.
Rett syndrome can cause irregular breathing patterns, including breath-holding and hyperventilation, particularly during waking hours.
A majority of individuals with Rett syndrome experience seizures, which can vary widely in type and frequency.
RETT SYNDROME IN KANSAS CITY
LEARN MORE &
SPREAD AWARENESS
The International Rett Syndrome Foundation is the leading organization funding research and supporting families. Every share, every conversation, every mile matters.