May
2
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
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 ([email protected]) Website: www.iowa.strollathon.org FB event: https://www.facebook.com/events/944620542600601/ Categories: Special Events - Strollathons
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
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 ([email protected]) Website: www.st-louis.strollathon.org FB event: https://www.facebook.com/events/481490805883829/ Categories: Special Events - Strollathons
May
4
Mon
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
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
![](https://www.rettsyndrome.org/wp-content/uploads/Alysson_Muotri-copy.jpg)
Categories: Education Slider Webinar
May
17
Sun
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
Categories: Special Events - Strollathons
May
26
Tue
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
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 Categories: Special Events - Run/Walk
Jun
9
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/03ede092ac1b628d97e5e32798c6e59f.jpg)
Categories: Education Slider Webinar
Jul
15
Wed
Jul 15 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/dc4292665fc01efcb07b74642862c677.jpg)
Categories: Education Slider Webinar
Jul
26
Sun
9th Annual Scramble for a Cure
Date: Sat July 26th 2020 Cost: $300/Team Location: The Chief Golf Course, Bellaire MI Contact: Sue Knight (231) 495-9794 or [email protected] https://www.golfthechief.com/ Information & Registration Categories: Special Events - Golf Tournaments
Aug
11
Tue
Aug 11 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/03ede092ac1b628d97e5e32798ef8417.jpg)
Categories: Education Slider Webasts Webinar
Sep
8
Tue
Sep 8 @ 5:00 pm – 6:30 pm
![](https://www.rettsyndrome.org/wp-content/uploads/03ede092ac1b628d97e5e32798f3481a.jpg)
Categories: Education Slider Webinar
Sep
12
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
9th Annual Nebraska Strollathon - Virtual Edition
Join Us for the 9th Annual Nebraska Strollathon At Rettsyndrome.org, the health & well being our of community is of utmost importance. Due to the Covid-19 pandemic, we have decided to host this year's Stroll VIRTUALLY! We have some tricks up our sleeve to make it a fun & engaging experience! Saturday, September 12th 2020 Event Chairs: Jacy Horst & Megan Ladenburger & Elly Gullion Information & Registration Categories: Special Events - Strollathons
Sep
17
Thu
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 Categories: Education Slider
Sep
19
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/Screen-Shot-2020-02-20-at-8.18.18-PM.png)
Categories: Special Events - Run/Walk
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 Categories: Education Slider
Sep
20
Sun
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
Categories: Special Events - Strollathons
Sep
24
Thu
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 Categories: Education Slider
Sep
26
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
17th Annual Cincinnati Strollathon: Virtual Edition
Join us for the 17th Annual Cincinnati Strollathon- VIRTUALLY! At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year's Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience! Be sure to follow us on Facebook to stay up to date on our fun virtual activities: facebook.com/Cincinnati-Tri-State-Strollathon Date: September, 26th, 2020 Location: your neighborhood, walking trail or treadmill! Event Chairs: Brittney Gibson, Jim Magato, & Jennifer Magato Information & Registration Categories: Special Events - Strollathons
Sep
30
Wed
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 Categories: Education Slider
Oct
3
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/RGR2020-760x760.jpg)
Rett Gets Rocked Ultramarathon
A weekend in which participants complete an ultra marathon of their choosing--from 50K to 100 miles, or from 6 to 48 hours. They can stretch their event over the month of October if desired. Proceeds from the event go to Rettsyndrome.org and the Rett Spectrum Clinic at St. Louis Children's Hospital! Register for RGRVUW by purchasing a race shirt! REGISTER Jay Murry will be doing his ultra-marathon in his local sub-division, the Vineyards. The Rett Gets Rocked headquarters will be located at: 756 Napa Lane, St. Charles MO 63304 on Sat 10/3 from 12pm- Sun 10/4 at 8pm. To donate to Jay, please click here. To follow along on Facebook, visit: https://www.facebook.com/24hourjaymurry/ For more information, contact Jay at [email protected] Categories: Special Events - Run/Walk
Oct
4
Sun
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
14th Annual Minnesota Virtual Strollathon
Join us for the 14th Annual Minnesota Virtual Strollathon!- Sunday October 4th, 2020
- Location: Virtual
- Event Chair: Mary Kallstrom ([email protected])
Categories: Special Events - Strollathons
Join us for the 12th Annual New Jersey Strollathon- VIRTUALLY!
At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the Covid-19 pandemic, we will be going Virtual this year! We have some tricks up our sleeve to make this a fun & engaging event. Date: Sunday, October 4th, 2020 Location: Your neighborhood, local walking trail or treadmill! Follow us on Facebook for contests, event updates and more! Event Chair: Leslie Greenfield ([email protected]) Information & Registration Categories: Special Events - Strollathons
Oct
10
Sat
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 Categories: Education Slider
Oct
13
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Dominique-Pichard_crop-2.jpg)
Categories: Education Slider Webasts Webinar
Oct
17
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
13th Annual St. Louis Virtual Strollathon
Dates: Saturday, October 17, 2020 Location: Virtual Event Chairs: Joyce Opinsky & Amy Kreher ([email protected]) Information & Registration Categories: Special Events - Strollathons
7th Annual Raleigh Strollathon: Virtual Edition
Join us for the 7th Annual Raleigh Strollathon VIRTUALLY! Please join us on Saturday, October 17th at 11am EST on Facebook for our 'virtual' event. Be sure to wear your past or present Stroll apparel and share photos on our FB page. Follow our Facebook page for more info, contests and more! Facebook page: https://www.facebook.com/NCIRSFStrollRaleigh/ Questions? Contact: Gwen Noecker ([email protected]) or (919) 426-5554. Information & Registration Categories: Special Events - Strollathons
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 Categories: Education Slider
Oct
24
Sat
18th Annual SoCal Virtual Picnic & Strollathon
Join us for the 18th Annual SoCal Picnic & Strollathon - Virtual Edition!- Date: October, 24th, 2020
- Location: Virtual
- Event Contact: Sherri Brady (562-619-0109 or [email protected])
Categories: Special Events - Strollathons
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