Events

Jan
7
Tue
RettEd in Spanish: ¿Qué es el síndrome de Rett?
Jan 7 @ 1:00 pm

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.

Register Today

Feb
11
Tue
RettEd: Gene Therapy CRISPR/Cas9 Potential for Rett Syndrome
Feb 11 @ 1:00 pm

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.

Register Today

Mar
10
Tue
RettEd: Walking and Rett Syndrome feat. Dr. Meir Lotan
Mar 10 @ 1:00 pm

Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel.

We will discuss movement and orthopedic issues in Rett syndrome, how and when these typically occur, and what we can do about it. We will also discuss walking and ambulation across the lifespan, as well as effective strategies at home. Submit your questions or comments when you register.

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.

Register Today

Apr
23
Thu
RettEd: What’s Going Right in Their Brain? Maximizing Neuroplasticity in Therapies
Apr 23 @ 1:00 pm

SPECIAL DAY: THURSDAY – The neuro-anatomy and circuitry assets of our children with Rett syndrome can change over time. Dr. Diener will explain how children can benefit from a well-developed, enriched therapy program. Dr. Diener will also share about her research project on understanding how Virtual Reality technology plays a productive role in OT and functional hand use.

Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher.

Registration & Information

May
2
Sat
4th Annual Iowa Virtual Strollathon
May 2 @ 9:00 am

4th Annual Iowa Strollathon

Saturday, May 2th, 2020
Time: 11:00am-2:00pm
Location: Kinzler Construction Services, 700 SE Oralabor Rd, Ankeny IA 50021

Event Co-Chairs: Kelly Zwald, Megan Hill Mitchum, Libby Stromer (CureRettIowa@gmail.com)
Website: www.iowa.strollathon.org
FB event: https://www.facebook.com/events/944620542600601/

Postponed: 13th Annual St Louis Strollathon
May 2 @ 9:00 am

13th Annual St Louis Strollathon

Saturday, May 2th, 2020
Registration: 9:00am, Stroll: 10:00am
Location: JCC, 2 Millstone Campus Dr., St. Louis, MO 63146

Event Chairs: Joyce Opinsky & Amy Kreher (stlstrollathon@gmail.com)
Website: www.st-louis.strollathon.org
FB event: https://www.facebook.com/events/481490805883829/

May
15
Fri
RettEd: Mini Brains in Space – Pushing the Limits of Science
May 15 @ 1:00 pm

SPECIAL DAY: FRIDAY, MAY 15

Award-winning neuroscientist and Rett syndrome expert Dr. Alysson Muotri, Director of the Stem Cell Program at the University of California at San Diego, will share how he and his lab are pushing the limits of science in the name of your child with Rett syndrome.

Dr. Mutori’s lab uses animal models, neural stem cells, human and other primates’ pluripotent cells, and several tools to investigate brain development, evolution, and neural disorders, including Rett syndrome.

Dr. Muotri has received recent headline attention for his experiment to study the impact of microgravity on human brain development, research which could improve disease modeling for neurodegenerative and developmental disorders as well as give clues into the future of humanity in space.

Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

Information & Registration

May
17
Sun
12th Annual Michigan Strollathon
May 17 @ 9:00 am

12th Annual Michigan Strollathon
Date: Sunday, May 17, 2020
Location: Drake Sport Park, 6801 Drake Rd, West Bloomfield Township, MI 48322
Registration: 10:00am, Stroll: 11:00am

Event Chair: Lisa Fenberg (fenyos@yahoo.com)
Website: www.michigan.strollathon.org
FB event: https://www.facebook.com/events/233787530951786/

Jun
9
Tue
Facebook Live Chat: Current State of Rett Syndrome Research
Jun 9 @ 1:00 pm

Join us on Facebook Live to hear from our Chief Science Officer, Dr. Dominique Pichard. She will speak to the current state of Rett syndrome research, clinical trials, and how researchers are continuing their work during COVID-19 to help us create a world without Rett. Like us on Facebook and mark your calendars to tune in.

Jul
15
Wed
RettEd: Longevity in Rett syndrome, Myths and Facts feat. Dr. Alan Percy and a panel of experts
Jul 15 @ 1:00 pm

Please join us WEDNESDAY, July 15, 2020 (note: this is not on our usual Tuesday) at 1:00 pm Eastern Time (New York) with Dr. Alan Percy from the University of Alabama at Birmingham and Primary Investigator for the Natural History Study, along with a panel of experts, as we discuss Myths and Facts around life expectancy in Rett syndrome.

Rett syndrome is a complex disorder, and inaccurate or invalid facts cause more harm than good. So join this webinar to learn the facts. Hear from experts and parents. More than empowering, it can be life-saving for our children with Rett syndrome. Even though the topic is difficult to talk about, we know you think about it. Let’s dispel the myths.

We believe that transformative treatments will come from gene therapy, medications and neuro-habilitative therapies. Our research strategy targets every possible approach so that we continue to not just improve longevity, but to decrease syndrome impact. We remain committed to creating solutions for today, to improve lives today, while we work to create a world without Rett syndrome.

With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

Information & Registration