Events

Oct
5
Sat
Gulf Coast Endurance Ride
Oct 5 @ 1:00 am
RRAA 2018 Launch

Gulf Coast Endurance Ride

Saturday, October 5th from Biloxi MS to Pensacola FL. If you’re up for a challenging ride, consider joining KC Byers and friends for a century ride. KC is the creator of the Rett Ride Across America and step-dad to Katelyn with Rett. Last year he completed his second 2,600 mile ride across the country. Here are the details for this year’s Endurance Ride: Start: Mary Mahoneys, 110 Rue Magnolia, Biloxi, MS 39530 Finish: WEAR TV, 4990 Mobile Highway, Pensacola FL 32506 114 mile with volunteer sag support & police escorts Join for any length of the ride. Here are the multiple lag points where you can join. Lag Point #1 (120 Miles): Meet at Mary Mahoneys, 110 Rue Magnolia, Biloxi, MS 39530 Lag Point #2 (90 miles): Meet at US Hwy 90 at the Missippi/Alabama line Lag Point #3 (70 miles): Meet at Raceway 6709, 5455 Government Bvld, Mobile AL 36619 (Theodore exit junction I-10 and US 90) Lag Point #4 (45 miles): Meet at Eastern Shore Bike Shop, 845 US-90 Ste 102, Daphne, AL 36526 Lag Point #5 (20 miles): Maw Maw’s Country Market, 26010 US Hwy 90, Robertsdale, AL Junction 90 & 87 END at: WEAR Channel 3, 4990 Mobile Hwy, Pensacola Fl Ride in style with your RRAA gear- select a jersey, cycle shorts or both. Shop here. Register TODAY!
OKC River Run @ Wiley Post Park
Oct 5 @ 8:00 am

OKC River Run

The goal of the OKC River Run is to raise support and awareness for Rett Syndrome, which is a genetic disorder that affects mainly girls and severely impairs "nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily." The need for research is critical. The OKC River Run is a USATF sanctioned and certified course along the picturesque Oklahoma River that provides a smooth, level, paved trail through downtown Oklahoma City free of vehicle traffic.
  • 6:30 a.m. to 8:30 a.m. - Packet Pick Up and onsite Registration.
  • 8:00 am. - Half Marathon* Start
  • 8:50 a.m. - 5K Start
  • 9:00 a.m. - 10K Start
  • 9:00 -11:00 a.m. - Awards Ceremony *See Details
All races will use chip timing for official race results.
All courses are USATF certified.
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
1
Sun
Napa Valley 1/2 & Full Marathon
Mar 1 @ 6:00 am

Join us for the Napa Valley Half & Full Marathon!

Ever wanted to run through wine country? Well here is your chance! Rettsyndrome.org has been granted ten charity bibs for the 2020 Napa Valley Half & Full Marathon! We are excited for this new partnership and can’t wait to grow our #RettRacer team! Help to end Rett syndrome while you run through wine country at this Boston qualifier race. Whether you plan to run or want to cheer on our team, please note all of the exciting information below! Date: Sunday, March 1st, 2020 Location: Napa, California Website (inclusive of hotel details, routes, etc): https://napavalleymarathon.org/ To participate as a Rett Racer in the Napa Valley Half or Full Marathon, please follow the steps below. *Note: there is a $2500 fundraising requirement for this event* Runners are responsible for all expenses incurred from race (registration, travel, etc).
  1. Register for the full or half marathon at https://napavalleymarathon.org/
  2. Half marathon Rett code (10% reg discount): RETTHALF2020
  3. Full marathon Rett code (10% reg discount): RETTFULL2020
  4. After registration, please visit Napa Valley team page to create your personal fundraising page.
  5. https://rettracer.everydayhero.com/us/napa-valley-2020-runners
  6. Note: You must login with an Everyday Hero account FIRST before you can join the ‘team’.
  7. Create & customize your fundraising page and share via social media and email with your contacts.
  8. Contact Jackie Ventura at [email protected] to order your Rett Racer t-shirt.
Rettsyndrome.org will have a tent at location TBD where runners can congregate post-race, Rett families can mingle and RSO will be passing out awareness information to spectators! Please follow this event to stay current on up to date information.
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
9
Thu
At-Home Moves and Stretches for Tweens & their Caregivers, feat. Meir Lotan @ Facebook Live
Apr 9 @ 11:00 am – 12:00 pm
Join us April 9 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with 4 U.S. families. Meir will work with their children who are between 8 and 13, with a range of abilities, using what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home. All live sessions will be posted on YouTube after the training.
Apr
16
Thu
At-Home Moves and Stretches for Adults & their Caregivers, feat. Meir Lotan @ Facebook Live
Apr 16 @ 11:00 am – 12:00 pm
Join us April 16 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with Rett families. Meir will work with their adult children who have a range of abilities. He will use what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home. All live sessions will be posted on YouTube after the training.
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
Apr
27
Mon
Communication Intervention, Part 1, feat. Gill Townend & Theresa Bartolotta  @ Facebook Live
Apr 27 @ 2:00 pm – 3:00 pm
Join us Monday, April 20 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they introduce Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the first of two sessions on Communication interventions. This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome. All live sessions will be posted on YouTube after the training.
Apr
30
Thu
Use Your Child’s Track System: Moves & Stretches, feat. Meir Lotan, PhD, PT @ Facebook Live
Apr 30 @ 11:00 am – 12:00 pm
Join us for our next live training session with Meir Lotan, PhD, PT, on Facebook. Dr. Lotan will be focusing on how to use your child or loved one’s home track system & ceiling lift for appropriate moves and stretches. Dr. Meir Lotan will also use this time to answer your questions. Take some time to watch the previous videos (found here) and submit your questions by Sunday, April 26 for Dr. Lotan through this survey: https://www.surveymonkey.com/r/9VDNM9W. Dr. Lotan will try to answer all your questions during our Facebook Live session. All live sessions will be posted on YouTube after the training.
May
4
Mon
Communication Intervention, Part 2, feat. Gill Townend & Theresa Bartolotta  @ Facebook Live
May 4 @ 2:00 pm – 3:00 pm
Join us Monday, April 27 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they conclude Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the second of two sessions on Communication interventions. This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome. All live sessions will be posted on YouTube after the training.
May
11
Mon
Communication Intervention, Part 3, feat. Gill Townend & Theresa Bartolotta  @ Facebook Live
May 11 @ 2:00 pm – 3:00 pm
Join us Monday, May 11 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they conclude Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the third installment of sessions on communication intervention strategies for Rett syndrome. This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome. All live sessions will be posted on YouTube after the training.
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
26
Tue
Ideas for modified aquatherapy at home, feat. Briana Czerwinski, PT @ Facebook Live
May 26 @ 2:00 pm – 3:00 pm
Join us Tuesday, May 26 at 2 p.m. New York time (EDT) with Briana Czerwinski, physical therapist, from the Rett Syndrome Clinic at Kennedy Krieger Institute. Briana will suggest ideas for modified aquatherapy that can be done by you, at home, in your swimming pool, hot jub, jacuzzi tub, bathtub or even a child-size blow-up pool to relax muscles, reduce anxiety, and guide safe movement and stretches for those with Rett syndrome. All live sessions will be posted on YouTube after the training.
Jun
6
Sat
Rett Racer Virtual Summer 5K
Jun 6 all-day
Rettsyndrome.org is excited to be hosting a virtual 5k on June 6th. Wherever you are lace up your shoes and hit your local neighborhood, trail (social distancing required) or treadmill and run (or walk!) to end Rett syndrome!
When: Saturday, June 6th, 2020
Where: Anywhere you are!
How: Register by creating an Everyday Hero page with us here.
·       No registration fee, however, fundraising is encouraged.
·       Once $100 has been raised, we will send you a Rett Racer t-shirt.
·       Share your photos on race day in our Facebook event on or on your Everyday Hero page. Use the hashtag #rettracers.
Any questions, please contact Jackie Ventura at [email protected] or 978-500-2495.
LEARN MORE
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
Run For Rett 2020 – Virtual
Sep 19 all-day
WHEN: Saturday, September 19, 2020 LOCATION: Busse Woods, Grove 28 Elk Grove Village, IL Contact info: Diane Ross ([email protected]). From the serious runner to the recreational runner, to family members and friends of all ages the Run For Rett is an event you don’t want to miss. Make a difference in the life of those affected by Rett Syndrome and join us for the Run For Rett 5K Run/Walk & 1 Mile Fun Run. Information & Registration Facebook Event
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