Events

Jul
9
Tue
Genetics of Rett Syndrome and MECP2
Jul 9 @ 1:00 pm – 2:30 pm

Topic: Genetics of Rett Syndrome and the MECP2 Gene
Speakers: Steve Skinner, MD and Hannah Warren, LMSW

Register

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!

 

Jul
28
Sun
Scramble for a Cure
Jul 28 all-day
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
8
Thu
Casting 4 A Cure
Aug 8 @ 9:00 am

Casting 4 A Cure is a loose band of compadres and compatriots who fly fish and fundraise to find a cure for Rett Syndrome. We have pulled together many of the fly fishing industry’s leaders and they have taken on the cause like it is their own. Come join us at one of the events or become a sponsor and help the thousands of girls affected by this crippling neurological disorder.

3 day single entry – $2,500.00
3 day team entry – $5,000.00

Location:
10 Warm Creek Ln.
Victor, ID 8345

Registration & Information

Aug
17
Sat
Running for Rett Syndrome 5K
Aug 17 @ 8:30 am

RUNNING FOR RETT SYNDROME 5K

Saturday, August 17, 2019
Registration – 8:30am Run Starts – 9:00am
Entry Fee – $20.00
Inquiries – Leah(507)251-4815

Registration & Information

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

Aug
31
Sat
Pennsylvania Strollathon
Aug 31 @ 9:00 am

6th Annual Pennsylvania Strollathon

Join us for the 6th Annual Pennsylvania Strollathon

Saturday August 31st, 2019
Registration: 9:00am, Stroll: 10:15am
Location: Millvale Riverfront Park, Millvale PA?
Directions :: Website 
Event Chair: Christina Dean (christina.dean13@yahoo.com) & Jennifer Langzettel (langzettelj@duq.edu)

Registration & Information

Sep
7
Sat
Chicago Strollathon & Picnic
Sep 7 @ 11:00 am

13th Annual Chicago Strollathon

Join us for the 13th Annual Chicago Strollathon!

Saturday September 7th, 2019
When: 11:00am
Location: Kankanee State Park
Map ll Directions
Event Chair: Misty Gruenes (gruenesmisty@gmail.com)

Visit the Event page

Nebraska Strollathon
Sep 7 @ 1:00 pm

8th Annual Nebraska Strollathon

Join us for the 8th Annual Nebraska Strollathon

Saturday, September 7th 2019
Registration: 1:00pm, Stroll: 2:00pm
Location: Yanney Park, 2020 W 11th St, Kearney, NE 68845
Rotary Shelter by the Splash pad
Event Chairs: Jacy Horst & Megan Ladenburger & Elly Gullion

Registration & Information