11th Annual New Jersey Strollathon
Join us for the 11th Annual New Jersey Strollathon!
Sunday, October 6, 2019
Registration: 10:00am
Stroll: 11:00am
Location: Maxwell Park, Hoboken NJ 07030
Event Chair: Leslie Greenfield (Leslieg417@gmail.com)
Join us for the 13th Annual Minnesota Strollathon!
Sunday October 6th, 2019
Registration: 1:00pm, Stroll: 2:00pm
Location: Savage Environmental Learning Center
Website :: Directions
Event Chair: Mary Kallstrom (marykallstrom@q.com)
Newly Published Communication Guidelines for Rett
Tuesday, October 15, 2019
1:00pm
Webinar
Please join us as Gill Townend, CertMRCSLT, M.Phil., B.Med.Sci.(Speech), Researcher and Augmentative & Alternative Communication Expert, Rett Expertise Centre Netherlands and Theresa Bartolotta, Ph.D., CCC-SLP, Professor, Department of Speech-Language Pathology, School of Education, Monmouth University, Monmouth University Graduate Center who will be introducing the development, final statement and recommendations of the largest body of evidence-based Communication guidelines to be published for Rett syndrome, work that was funded by Rettsyndrome.org and accomplished by a global team of experts.
Our presenters will also be sharing the accessible, user-friendly handbook version of the guidelines with recommendations of how to embed these at home, in the classroom, and in day programs. Our goal is to help empower you with strategies in the here and now while we accelerate work towards 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.
7th Annual San Antonio Strollathon
Join us for the 7th Annual San Antonio Strollathon!
Saturday October 19th, 2019
Registration: 10:00am, Stroll: 10:30am
Location: San Antonio Aquarium
Website :: Directions
Event Chair: Courtney Bernal
2nd Annual Tennessee Strollathon
Join us for the 2019 Strollathon season!
NEW DATE: Saturday October 19th, 2019
Location: Athens Park, Athens, TN
Registration: 10:00am, Stroll: 11:00am
Event Chair: Sally Teague (sallymteague@yahoo.com)
$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
10th Annual Florida Strollathon
Join us for the 2019 Strollathon season!
November 2nd, 2019
Space Field of Dreams, West Melbourne FL
9:00am-1:30pm
Event Contact: Henry Perez (henrymperez@att.net)
Please join us as we speak to an orthopedic expert in neuromuscular scoliosis and developmental hip dysplasia. We will discuss how and when these typically occur in Rett syndrome, and what we can do about 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 Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams.
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.
Dr. Kyle Fink and Dr. Dominique Pichard explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This live webcast will be especially helpful to caregivers trying to understand the current state of this research and where we are headed. Questions and comments submitted in advance will be addressed, and there will be time for questions.
Dr. Fink is a gene therapy neuro-scientist at UC Davis in San Diego.
Dr. Pichard is Rettsyndrome.org’s Chief Science Officer
Visit our Education page for upcoming 2020 webcast topics, and to access recording links from past webcast and associated QA documents.