Topic: Siblings Unique Concerns, Unique Opportunities
Speaker: Emily Holl, Director, Sibling Support Project
Hosted with Gillette Children’s Specialty Healthcare Rett Syndrome Services Clinic – St. Paul, MN (Regional Association Partner)
Topic: Nutrition Strategies for Rett SyndromeRettsyndrome.org Ed Day hosted by TBD – Boston, MA
Hosted by UCSF Benioff Children’s Hospitals Katie’s Clinic for Rett and Related Disorders, a Rettsyndrome.org Clinical Research Center of Excellence
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.
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.)
Fee: $10/per person. Diagnosed children are FREE.
Includes: 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.
2019 Family Conference of the Northwest Rett Syndrome Association
$10 registration fee per family including conference, breakfast and lunch.
Families and caregivers: don’t miss the opportunity to hear from leading doctors, researchers and service professionals in the Rett Syndrome field.
For more information, email: delmonte.urmc.edu or RettSyndromeFamilyEducation@urmc.rochester.edu
Please join us Tuesday, January 7, 2020 at 1:00 pm eastern for a presentation in Spanish from our bilingual Rett syndrome expert neurologist Dr. Mario Petersen, Section Chief, Neurodevelopmental Pediatrics and Endowed Chair, The Gerber Center for Infant Development and Nutrition, at Helen DeVos Children’s Hospital in Grand Rapids, MI, and recent past Medical Director of the Rett Syndrome clinic at Oregon Health Sciences University.
We will discuss ¿Qué es el síndrome de Rett?
This will be valuable for your Spanish-speaking loved ones who want to better understand Rett syndrome.
RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.