Topic: Nutrition Strategies for Rett SyndromeRettsyndrome.org Ed Day hosted by TBD – Boston, MA
Topic: Genetics of Rett Syndrome and the MECP2 GeneHosted 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.
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.
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)
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)
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
Please join us Tuesday, September 10th at 1:00 pm eastern with Huda Y. Zoghbi, M.D., Director, Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital; Baylor College of Medicine as we journey from discovery of the Rett syndrome disease-causing MECP2 gene to where that discovery and subsequent learnings have taken us to today.
This live webinar is intended to provide hope and inspiration to caregivers and families. Our goal is to help you frame our collective Hope for better treatments and ultimately a cure for Rett syndrome while empowering you with strategies in the here and now. 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 webinar topics, and to access recording links from past webinars 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
14th Annual Portland Strollathon
Join us for the 14th Annual Portland Strollathon
Sunday, September 22nd
Registration: 1:00pm, Stroll: 2:30pm
Location: Rose Quarter, Portland OR
Directions :: Website
Event Chair: Lacey & Leigh Calvert