Events

Jul
9
Tue
Genetics of Rett Syndrome and MECP2
Jul 9 @ 1:00 pm – 2:30 pm
Topic: Genetics of Rett Syndrome and the MECP2 Gene Speakers: Steve Skinner, MD and Hannah Warren, LMSW Register
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
Aug
27
Tue
RettEd: Taking Care of the Caregiver
Aug 27 @ 1:00 pm
Sarika Peters, PhD, , Assoc. Professor of Pediatrics and Psychiatry & Behavioral Sciences, Vanderbilt Kennedy Center Marie Bateh, Physical Therapist and parent will explore specific domains as a framework to consider important issues and creative options for taking care of ourselves to ensure we have the energy, mindset and health needed to care for our loved one with Rett syndrome. Our goal is to help you frame an empowered life for yourself today, while we pursue 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. Visit www.rettsyndrome.org/RettEd for additional 2019 webcast topics, and to access recording links from past webcasts 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. Registration & Information
Sep
10
Tue
RettEd: 2019 Research Update 20 Years Since the MECP2 Gene Discovery feat. Huda Y. Zoghbi, M.D.
Sep 10 @ 1:00 pm
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 Registration & Information
Oct
15
Tue
RettEd: Newly Published Communication Guidelines for Rett
Oct 15 @ 1:00 pm

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. Registration & Information
Oct
24
Thu
Rett Syndrome Ed Day: Communication and Literacy for Individuals with Complex Communication Needs @ Monmouth University
Oct 24 @ 9:00 am
WHEN | Thursday, October 24th, 2019 TIME | 9:00am WHERE | Monmouth University: Directions | Website Registration Information
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]
Nov
12
Tue
RettEd: Orthopedics: A Focus on Scoliosis and Hips
Nov 12 @ 1:00 pm
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. Register Today
Dec
10
Tue
RettEd: Clinical Trial Enrollment Opportunities and Status Update
Dec 10 @ 1:00 pm
Please join us as Tim Benke, MD PhD, Director, Rett syndrome Clinic, Children's Hospital Colorado, and Rettsyndrome.org Medical Advisor and Paige Nues, Director of Family Empowerment at Rettsyndrome.org to explore the clinical trials landscape outlook for 2020. This live webcast will be especially helpful to caregivers who are wondering if participating in a clinical trial could be an option for their family and how to become research-ready. We will discuss what clinical trials are enrolling, about to enroll, or have closed enrollment. We will also discuss enrollment criteria, what it means to participate in a trial, and hear from a panelist of parent trailblazers whose children have participated in a Rett syndrome clinical trial to hear how they did 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 Webcasts are a free resource designed to empower families affected by Rett syndrome and their care teams. Register Today
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
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
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
Aug
11
Tue
RettEd: What Hurts? Understanding Pain and Rett Syndrome feat. Dr. Frank Symons
Aug 11 @ 1:00 pm
Please join us Tuesday, August 11, 2020 at 1:00 pm Eastern Time (New York) with Dr. Frank Symons, Associate Dean for Research and Policy, Department of Psychology, and the Center for Neurobehavioral Development at the University of Minnesota as we discuss issues of pain in Rett syndrome. Rett syndrome is a complex disorder, and sharing of accurate information is more than empowering, it can be life-saving for our children with Rett syndrome. So join this webinar to learn the facts. Even though the topic is difficult to talk about, we know you think about it. In terms of pain, Dr. Symons' areas of specific research include (a) the reliable and valid assessment of pain in children and adults with significant communicative and motor impairments; (b) the relation between behavioral and biological variables as markers for altered pain; (c) modifying/adapting sensory testing; and (d) the relation between pain and problem behavior, specifically self-injury. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Sep
8
Tue
RettEd: Holiday Life Hacks for Rett Syndrome feat. a panel of parent experts
Sep 8 @ 5:00 pm – 6:30 pm
Please join us Tuesday, September 8, 2020 at 5:00pm Eastern Time (New York) with Rettsyndrome.org and a panel of creative experienced parents who are ready to share their Rett Life Hacks, especially how to plan and execute inclusive and enjoyable dress-up and gift-giving celebrations for the whole family such as birthday parties, Halloween, school field trips and the upcoming holidays. "Life Hacks" are simple and clever tips and techniques for accomplishing tasks more easily and efficiently, overcoming many of our common Rett-life frustrations in simple and deliciously clever ways. Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how a little creativity and out-of-the-box thinking can expand everyone's horizons! With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Sep
17
Thu
Gillette Children’s Hospital Rett Clinic Town Hall Meeting:
Sep 17 @ 8:00 pm

Rett Syndrome Services - Phalen Clinic at Gillette Children's Hospital Town Hall, feat. Dr. Beisang, Dr. Feyma and more

Date: Thu, Sep 17, 2020 Time: 7:00 PM - 8:30 PM Are you having difficulty understanding the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Thursday, September 17, 2020, at 7pm -8:30pm (CT). Join us as Rettsyndrome.org, the Rett Clinic team at Gillette Children's Hospital, the Rett research team at University of Minnesota, and members from the Midwest Rett Syndrome Foundation (MRSF) discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Sep
19
Sat
Children’s Hospital Colorado Rett Clinic Town Hall Meeting
Sep 19 @ 12:00 pm

Rett Syndrome Clinic at Children's Hospital Colorado Town Hall, feat. Dr. Benke, Tristen Dinkle & More

Date: Sat, Sep 19, 2020 Time: 10:00 AM - 11:30 AM Are you having difficulty understanding the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Saturday, September 19, 2020, at 10am -11:30am (MT). Join us as Rettsyndrome.org, the Rett Clinic team at Children's Hospital Colorado, and members from the Rocky Mountain Rett Association (RMRA) discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Sep
24
Thu
Washington University Rett Clinic Town Hall Meeting
Sep 24 @ 1:00 pm

Washington University Rett Spectrum Clinic Town Hall, feat. Drs. Ryther, Dr. Weisenberg & More

Date: Thu, Sep 24, 2020 Time: 12:00 PM - 1:30 PM CDT Are you having difficulty understanding the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Thursday, September 24, 2020, at 12pm -1:30pm (CDT). Join us as Rettsyndrome.org presents the Rett Clinic team at St. Louis Children's Hospital to discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Sep
30
Wed
The Blue Bird Circle Rett Center Town Hall Meeting
Sep 30 @ 1:00 pm

The Blue Bird Circle Rett Center at Texas Children's Hospital Town Hall, feat. Dr. Glaze, Dr. Suter & Dr. Motil

Date: Wed, Sep 30, 2020 Time: 12:00 PM - 1:30 PM CDT Are you having difficulty understanding the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Wednesday, September 30, 2020, at 12pm -1:30pm (CT). Join us as Rettsyndrome.org and the Rett Clinic team at Texas Children's Hospital discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Oct
10
Sat
Rush University Rett Clinic Town Hall Meeting
Oct 10 @ 12:00 pm

Rush University Rett Clinic Town Hall, feat. Drs. Heydemann, Buhrfiend and Berry-Kravis

Date: Sat, Oct 10, 2020 Time: 11:00 PM - 12:30 PM Please join us Saturday, October 10, 2020 at 11:00 am Central Time (Chicago) with Dr. Peter Heydemann, Dr. Colleen Buhrfiend, Dr. Elizabeth Berry-Kravis, and the leadership from Rettsyndrome.org (RSO) and the Rett Syndrome Association of Illinois (RSAI) for an encouraging update about clinical care recommendations and appointments; clinical trials; the research process; and family empowerment at this point in time. There is no fee to attend this Town Hall, but pre-registration is required. There will be time for QA at the end of the presentation. We encourage you to submit your questions during Registration to enable our Speakers to best prepare their answers to address what’s on your mind in the time allowed. If a question comes to mind after you have Registered, you may email your question for any of the Presenters to Paige Nues at [email protected] This live webcast will be especially helpful to caregivers trying to understand current state of medical appointments, treatment, clinical trials, and research at Rush University Medical Center. Information & Registration
Oct
13
Tue
RettEd: Clinical Trial Update
Oct 13 @ 1:00 pm
Please join Rettsyndrome.org on Tuesday, October 13, 2020 at 1:00pm Eastern Time (New York) for status updates on clinical trial and research enrollment opportunities in the U.S. Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how we all have a role to play in research progress. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Oct
17
Sat
Cincinnati Children’s Hospital Rett Clinic Town Hall Meeting
Oct 17 @ 12:00 pm

Cincinnati Children's Hospital Rett Clinic Town Hall Meeting, presented by Rettsyndrome.org

Date: Sat, Oct 17, 2020 Time: 12:00 PM - 1:30 PM EDT Are you having difficulty understanding the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Saturday, October 17, 2020, at Noon - 1:30pm (ET). Join us as Rettsyndrome.org and the Rett Clinic team at Cincinnati Children's Hospital discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Then during the last half hour, we’ll be taking your pre-submitted questions*. Guest Presenters: Cincinnati Children's Hospital: Dr. Shannon Standridge, medical director Rettsyndrome.org: Paige Nues, host Information & Registration
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
Nov
18
Wed
Children’s Hospital of Philadelphia Rett Clinic Town Hall Meeting
Nov 18 @ 12:00 pm

Children's Hospital of Philadelphia Rett Clinic Town Hall Meeting

Date: November 18 Time: 12:00pm Are you wanting to better understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like to re-connect and re-center with your Rett syndrome community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Wednesday, November 18, 2020, at 12pm -1:30pm (ET). Join us as Rettsyndrome.org, and the Rett Clinic team at Children's Hospital Philadelphia discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Then during the last half hour, we’ll be taking your pre-submitted questions*. Guest Presenters: Children's Hospital of Philadelphia: Dr. Eric Marsh, medical director Rettsyndrome.org State Representative Rettsyndrome.org: Paige Nues, host Information & Registration
Dec
5
Sat
Montefiore Rett Clinic Town Hall Meeting
Dec 5 @ 3:00 pm

Tri-State Rett Syndrome Center Children's Hospital at Montefiore Town Hall, feat. Dr. Djukic & More

Date: Sat, Dec 5, 2020 Time: 3:00 PM - 4:30 PM Are you having difficulty understanding the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Saturday, December 5, 2020, at 3pm -4:30pm (ET). Join us as Rettsyndrome.org, and the Rett Clinic team at Children's Hospital at Montefiore discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Dec
8
Tue
RettEd: What Do They See? Vision in Rett Syndrome
Dec 8 @ 1:00 pm
Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Tristen Dinkel, RN about Cortical Visual Impairment (CVI) in Rett syndrome. Our loved ones with Rett syndrome often exhibit particular eye movements or gaze patterns. Is this a motor behavior or visual strategy? What do our children see? How do they process visual information? Register now, and submit your questions. Pre-submitted relevant questions will be addressed, and there will be time for write-in questions during the session. REGISTER Our RettEd Webcasts are Free, but registration is required. RettEd Webcasts are recorded. When you register, you will receive a link to the recording within 1-2 days after the presentation. Rettsyndrome.org is committed to standing with you today, to fighting to transform your tomorrow. Check out our other upcoming webcasts, as well as an incredible library of past webcasts on multiple Rett topics: www.rettsyndrome.org/education.