Mar
10
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Meir-Lotan.png)
Categories: Ed Day Education Slider
Apr
23
Thu
Apr 23 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/april.png)
Categories: Ed Day Education Slider
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
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
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
Jun
13
Sat
![Cammy's Golden birthday](https://www.rettsyndrome.org/wp-content/uploads/Cammy-Can_event-banner.jpg)
Categories: Special Events - General
Jun
18
Thu
![](https://www.rettsyndrome.org/wp-content/uploads/78803772_10157948784504452_1641598429664641024_o.jpg)
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 [email protected] or Jennifer Mosca at [email protected] LEARN MOREJul
15
Wed
Jul 15 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/dc4292665fc01efcb07b74642862c677.jpg)
Categories: Education Slider Webinar
Jul
30
Thu
Casting 4 A Cure 2020 – Cancelled
July 30-Aug 03 Casting 4 A Cure is a loose band of compadres and compatriots who fly fish and fundraise to find a cure for Rett Syndrome. We have pulled together many of the fly fishing industry's leaders and they have taken on the cause like it is their own. Come join us at one of the events or become a sponsor and help the thousands of girls affected by this crippling neurological disorder. Information Categories: Special Events - General
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
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