2019 Family Conference of the Northwest Rett Syndrome Association
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
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
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
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.
WHEN | Thursday, October 24th, 2019
TIME | 9:00am
WHERE | Monmouth University: Directions | Website
$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
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.