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 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.
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.
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.
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/
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/
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/
Postponed-East Coast Rettsyndrome.org Ed Day
Due to COVID-19, this event has been postpone.
Baltimore, MD (in partnership with Kennedy Krieger Institute )
Our Ed Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more.
RettGetAway: Postponed
After much consideration, our RettGetAway committee has decided to postpone the June 2020 RettGetAway in San Diego. The health of our children is of utmost concern. Once it is deemed safe and sound to convene large groups in public spaces again, we will evaluate a future Rett GetAway.
Many were working to create this ‘life without limits’ opportunity. A special thanks to the Kayla Mosca Foundation, Surfing Madonna, Surfin’ Fire, Merlin’s Magic Wand in association with Legoland San Diego, The Cassara Carlsbad by Hilton, our CA State Rep Sherri Brady, and ACADIA Pharmaceuticals.
We hope that all of our families and partners emerge from this situation whole, intact, and able to plan an even more extraordinary RettGetAway!
If you have made any travel bookings for the RettGetAway, we advise you to cancel them now while forgivable and with no penalty.
Rettsyndrome.org will be returning the group Legoland tickets awarded by Merlin’s Magic Wand so that a future award can be made again to either our group or to individuals who may choose to apply at another time (they only allow one Magical Day Out per family, one time)
We appreciate your understanding, and we hope that you all stay healthy and safe.
Please direct any questions to Paige Nues at pnues@rettsyndrome.org or Jennifer Mosca at info@thekaylamoscafoundation.org