Intended for anyone wanting to connect on issues important to Rett syndrome families, especially clinical trial information and emphasis on the enriched environment. Attendees will enjoy a fun camp-style day of discussion and “living education” activities that will cover: research updates, medical and therapeutic interventions, and communication strategies.

Program is subject to change.

Hosted by UCSF Benioff Children’s Hospitals Katie’s Clinic for Rett and Related Disorders, a Clinical Research Center of Excellence

WHEN | Saturday, July 20, 2019

WHERE | Camp Arroyo, 5555 Arroyo Road, Livermore, CA 94550

TIME | 9:00a.m. - 4:00p.m. (please arrive at 8:30a.m.)

Keynote speakers and activities include:

  • Mary Jones, MD, Medical Director, Rett Clinic, UCSF Children’s Hospitals Oakland
  • Judy Lariviere, M.Ed, OTR/L, Communications Specialist, Rett Clinic, UCSF Children’s Hospitals Oakland
  • Saronjini Budden, MD, FRCP (C) FAAP, Retired OHSU Rett clinic director and researcher
  • Kyle Fink, PhD, UCDavis, Center for Neuroscience and Institute for Regenerative Cures
  • Special activities: in-pool aquatherapy; hands-on directed Communication activities; hippotherapy demonstration; clinical trial participation parent panel; music therapy; nutrition recommendations; sibling activities and more!

A Facebook event page will be developed to allow further networking – look for details!


$10/per person. Diagnosed children are FREE.


Presentations, hands-on activities and demonstrations, interactive panel discussion, continental breakfast and lunch. We will have an onsite photographer for family portraits for RSO awareness and education materials. If you choose to participate, photos will be shared with you at no charge.


Mandatory Camp Arroyo Waiver - click to download, complete in pen, then scan or take a picture and return by email upon registering to


Free onsite parking


Respite will not be provided, but there will be many activities for your diagnosed child and siblings to participate in with you.

Hotel Information

All recommended hotels are on or around Constitution Street and are about a 20 min drive to Camp Arroyo. They are near but not walking distance to restaurants, Boomers, and cute historic downtown Livermore for activities that you may wish to enjoy before or after the Ed Day. You can find best rates through a booking website like

Livermore Courtyard by Marriott
Rett group rate is $139/night - rooms should be booked by July 1 – no penalty for cancelling 48 hours before:
No pool, free wi-fi, breakfast available but not included
Call 800-321-2211. You must refer to "Rett Syndrome" group to receive the group rate.
Or book online Book your group rate for Rett Syndrome Group

Hilton Garden Inn Livermore – indoor pool, free wi-fi, breakfast available but not included, approx. $200/night

Holiday Inn Express & Suites Livermore – outdoor pool and breakfast is included, approx. $180/night

This day is made possible by a generous grant from the following