Events

Jul
20
Sat
Rettsyndrome.org Bay Area Ed Day @ Camp Arroyo
Jul 20 all-day

Hosted 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. REGISTER NOW!  
Aug
2
Fri
Northwest Rett Syndrome Foundation Education Day @ Best Western Plus- Hood River Inn
Aug 2 @ 9:00 am – Aug 4 @ 12:00 pm
2019 Family Conference of the Northwest Rett Syndrome Association
Nov
2
Sat
URMC Rett Syndrome Family Education Day @ University of Rochester Medical Center
Nov 2 @ 8:00 am
$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. Information & Registration For more information, email: delmonte.urmc.edu or [email protected]
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
Nov
15
Sun
Rett Education 2020, Online Conference
Nov 15 – Nov 21 all-day

Rett Education 2020

Communicate, Educate, Advocate 7-day online conference with international expert speakers Date: November 15-21, 2020 Details: Unlike physical conferences where you can end up sitting through content you just don't need, Rett Education 2020 – Communicate, Educate, Advocate is delivered entirely online. Dip in and watch the specific talks you want or catch them all. It’s up to you! All talks will be available to watch again or watch later, as long as you have registered. REGISTRATION & INFORMATION
Oct
21
Fri
Rett Spectrum 5th Annual Family Education Symposium @ Washington University School of Medicine
Oct 21 @ 3:00 pm
Date: Friday, October 21, 2022 Time: 3:00 p.m. CT (entry in-person/zoom at 2:45p) Location: Washington University School of Medicine (660 S Euclid Ave, St. Louis, MO 63110) INFORMATION & REGISTRATION
Oct
22
Sat
IRSF RettEd Day at Kennedy Krieger Institute @ Kennedy Krieger Institute
Oct 22 @ 8:00 am – 4:00 pm
Date: October 22, 2022 Time: 8:00 a.m. - 4 p.m. Eastern Time Location: Kennedy Krieger Institute's Arnold J. Capute, MD, MPH Conference Center – Eighth Floor (1741 Ashland Avenue, Baltimore, MD 21205) Our RettEd 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. REGISTRATION & INFORMATION Make sure to follow the event on Facebook to stay up to date!
Jun
22
Thu
2023 RettAway @ Morgan's Wonderland
Jun 22 – Jun 25 all-day
Date: June 22-25, 2023 Location: Morgan's Wonderland Accessible Theme Park (5223 David Edwards, San Antonio, TX 78233) For Event Information & FAQs, CLICK HERE. IRSF’s RettAway is a destination vacation for families to spend time together and build connections with other members of our Rett community. It’s not a conference – there are no meetings or educational presentations. It's an exclusive opportunity for your family to have fun together in a location that understands the challenges and joys of caring for a loved one with Rett syndrome. This year’s RettAway brings us back to Morgan’s Wonderland in San Antonio, Texas! Join us for a long weekend of fun in the sun at this accessible theme park, including an afternoon at Morgan’s Inspiration Island Splash Experience reserved just for Rett families. There will be ample time to catch up with friends new and old throughout the weekend or explore all the city has to offer. No matter where you are on your Rett journey, there will be activities, support, and bonds to be made at this June’s RettAway! REGISTRATION & HOTEL INFORMATION

Already registered?

Make sure to RSVP "Going" on the Facebook event page to stay up to date on deadlines, information, and to make plans to connect with other families! Sponsored by:
Aug
5
Sat
IRSF RettEd Day with UCSF Oakland Children’s CoE @ Camp Arroyo
Aug 5 @ 9:30 am – 4:00 pm
Date: Saturday, August 5, 2023 Time: 9:30 a.m. - 4 p.m. PT Location: Camp Arroyo (5535 Arroyo Rd, Livermore, CA 94550) Our RettEd 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. REGISTER & MORE INFORMATION
Sep
9
Sat
IRSF RettEd Day with UTSW Dallas CoE @ Rett Syndrome & Related Disorders Clinic
Sep 9 @ 9:00 am – 5:00 pm
Date: Saturday, September 9, 2023 Time: 9:00 a.m. - 5 p.m. CT (registration opens at 8:30a) Location: Rett Syndrome & Related Disorders Clinic (Dallas, TX) Our RettEd 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. REGISTER & MORE INFORMATION
Sep
30
Sat
IRSF RettEd Day with Montefiore CoE @ Tri-State Rett Syndrome Center at Montefiore
Sep 30 @ 9:00 am – 5:00 pm
Date: Saturday, September 30, 2023 Time: 9:00 a.m. - 5 p.m. ET (registration opens at 8:30a) Location: The Children's Hospital at Montefiore (Bronx, New York) Our RettEd 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. REGISTER & MORE INFORMATION