Events

May
11
Sat
RettEd: Adulthood: Living and Lifestyle options Saturday: Special Day/Time
May 11 all-day
May
18
Sat
Sesame Place Dinner & Park @ Sesame Place
May 18 – May 19 all-day
Sesame Place Dinner & Park @ Sesame Place

Enjoy an accessible family friendly park for 2 days with a private dinner on Saturday. Tickets are $50/person; this is at least a $70 savings! Plan your Accessible Seasame Place Day!

Dinner:

Date: Saturday, May 18 Time: 6:00 - 7:00 pm Where: Abby's Garden Grille After 5:30 pm parking is free Tickets must be pre-purchased by Wednesday, May 8th 2019 and are non-refundable. Tickets include: Private after-hours dinner with a Sesame character appearance, and 2-day park passes to be used on Saturday, May 18th and Sunday, May 19th. The park is less than a mile away from the Rett Ed Day at Sheraton Bucks County. Parking at Sesame Place is $27 or $23 based on the lot. The Sheraton offers free parking and free non-ADA shuttle. For more information contact Paige Nues [email protected] or with questions to Erin Cassano (local Rett parent) [email protected]  
Jun
22
Sat
Rettsyndrome.org Boston Ed Day
Jun 22 all-day
Rettsyndrome.org Ed Day hosted by TBD – Boston, MA
Jul
20
Sat
Rettsyndrome.org Bay Area Ed Day @ Camp Arroyo
Jul 20 all-day

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. REGISTER NOW!  
Aug
27
Tue
RettEd: Taking Care of the Caregiver
Aug 27 @ 1:00 pm
Sarika Peters, PhD, , Assoc. Professor of Pediatrics and Psychiatry & Behavioral Sciences, Vanderbilt Kennedy Center Marie Bateh, Physical Therapist and parent will explore specific domains as a framework to consider important issues and creative options for taking care of ourselves to ensure we have the energy, mindset and health needed to care for our loved one with Rett syndrome. Our goal is to help you frame an empowered life for yourself today, while we pursue our collective Hope for better treatments and ultimately a cure for Rett syndrome. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Visit www.rettsyndrome.org/RettEd for additional 2019 webcast topics, and to access recording links from past webcasts and associated QA documents. RettEd is a monthly series featuring expert Speakers on Rett-related research and care topics, hosted by Rettsyndrome.org, to help pave your personal pathway to empowerment. Registration & Information
Sep
27
Fri
European Rett Syndrome Conference
Sep 27 all-day
The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems. The purpose of Rett Finland  is to support families with Rett's syndrome diagnosed child. The Association has about 100 members. For more information on the association's activities, visit the association's website at www.rettfinland.fi and on Facebook www.facebook.com/Rett-Finland Registration & Information
Sep
28
Sat
European Rett Syndrome Conference
Sep 28 all-day
The program will have lectures from international experts. Subjects include epilepsy, learning and communication, physiotherapy and other rehabilitation, nutrition, sleep and neurological problems. The purpose of Rett Finland  is to support families with Rett's syndrome diagnosed child. The Association has about 100 members. For more information on the association's activities, visit the association's website at www.rettfinland.fi and on Facebook www.facebook.com/Rett-Finland Registration & Information
Oct
24
Thu
Rett Syndrome Ed Day: Communication and Literacy for Individuals with Complex Communication Needs @ Monmouth University
Oct 24 @ 9:00 am
WHEN | Thursday, October 24th, 2019 TIME | 9:00am WHERE | Monmouth University: Directions | Website Registration Information
Dec
10
Tue
RettEd: Clinical Trial Enrollment Opportunities and Status Update
Dec 10 @ 1:00 pm
Please join us as Tim Benke, MD PhD, Director, Rett syndrome Clinic, Children's Hospital Colorado, and Rettsyndrome.org Medical Advisor and Paige Nues, Director of Family Empowerment at Rettsyndrome.org to explore the clinical trials landscape outlook for 2020. This live webcast will be especially helpful to caregivers who are wondering if participating in a clinical trial could be an option for their family and how to become research-ready. We will discuss what clinical trials are enrolling, about to enroll, or have closed enrollment. We will also discuss enrollment criteria, what it means to participate in a trial, and hear from a panelist of parent trailblazers whose children have participated in a Rett syndrome clinical trial to hear how they did it. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. RettEd Webcasts are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today