Nues fam pic

Our Story

Katie Nues was born in 2002 a healthy happy child. All signs pointed to a positive future for Katie and the Nues family. Within 6 months, Jesse and Paige began to suspect something was not quite right. By one year of age, Katie slowly began losing her skills to speak, physically play with toys, and feed herself. At 17 months old, on Dec 10, 2003, Katie was diagnosed with Rett Syndrome, a devastating neurological disorder that is genetic but not hereditary.  Although it steals all motor skills, and causes seizures, swallowing and digestive issues, scoliosis, sleep and breathing issues, it is not degenerative and Katie is a happy girl surrounded by a loving family and friends.  Rett Syndrome may be a scary disease on paper, but she is a wonderful child to know.  The closest clinic at the time of her diagnosis was at Texas Children’s Hospital in Houston. At the age of 2, Katie & her parents jumped on a plane, flew to Texas, and were seen at the wonderful clinic. Long story short, on the plane ride back to San Francisco, the concept of Katie’s Clinic for Rett Syndrome was born on a napkin and scripted to be created.  Exactly within 1 year of her diagnosis, on Dec 10, 2004, the clinic opened its doors to the first patients on the West Coast thanks to the startup support of the Rowan Branch, a philanthropic group of UCSF Benioff Children’s Hospital Oakland.  The clinic has been growing strong ever since, and become a model and inspiration to other centers that have now opened across the country.  We hope you will join us in protecting this lifeline.

Why We Are Here

The parents of Katie created Katie’s Clinic for Rett Syndrome in 2004.  The Katie Nues Foundation was created as a direct funding source for the clinic.  You can find more information about the great contribution the clinic has given to the community who are stricken with Rett syndrome here: