Events

Dec
11
Tue
Siblings Unique Concerns, Unique Opportunities
Dec 11 @ 1:00 pm – 2:30 pm

Topic: Siblings Unique Concerns, Unique Opportunities
Speaker: Emily Holl, Director, Sibling Support Project

Click to View Video

Apr
12
Fri
Rett Spectrum 2nd Annual Family Education Symposium
Apr 12 all-day
Apr
27
Sat
Midwest Rett Syndrome Foundation Education Day
Apr 27 all-day

Hosted with Gillette Children’s Specialty Healthcare Rett Syndrome Services Clinic – St. Paul, MN (Regional Association Partner)

May
11
Sat
RettEd: Adulthood: Living and Lifestyle options Saturday: Special Day/Time
May 11 all-day
May
18
Sat
Philadelphia Ed Day
May 18 all-day
Jun
11
Tue
Nutrition Strategies for Rett Syndrome
Jun 11 @ 1:00 pm – 2:30 pm

Topic: Nutrition Strategies for Rett Syndrome
Speaker: Suzanne Geerts, MS, RD, LD UAB

Register

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
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
2
Fri
Northwest Rett Syndrome Foundation Education Day
Aug 2 @ 9:00 am – Aug 4 @ 12:00 pm

2019 Family Conference of the Northwest Rett Syndrome Association

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