Aug
27
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Sarika-and-Marie.jpg)
Categories: Education Slider Webasts
Sep
10
Tue
Sep 10 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/huda-zoghbi-2017.jpg)
Categories: Education Slider Webinar
Sep
27
Fri
![](https://www.rettsyndrome.org/wp-content/uploads/076c213b9108d8c3c48a6f876f8f0b64.png)
Categories: Special Events - Meetings/Symposiums
Sep
28
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/076c213b9108d8c3c48a6f876f8f0b64.png)
Categories: Special Events - Meetings/Symposiums
Oct
5
Sat
![RRAA 2018 Launch](https://www.rettsyndrome.org/wp-content/uploads/events-header-760x425.png)
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! Categories: Special Events - Run/Walk
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 Categories: Special Events - Run/Walk
Oct
15
Tue
Newly Published Communication Guidelines for Rett
Tuesday, October 15, 2019 1:00pm Webinar![](https://www.rettsyndrome.org/wp-content/uploads/Gill-and-Theresa.jpg)
Categories: Education Slider Webinar
Oct
24
Thu
Oct 24 @ 9:00 am
WHEN | Thursday, October 24th, 2019 TIME | 9:00am WHERE | Monmouth University: Directions | Website Registration Information
Nov
2
Sat
Nov 2 @ 8:00 am
![](https://www.rettsyndrome.org/wp-content/uploads/URMC-RS-Family-Ed-Day.png)
Categories: Ed Day Education Slider
Nov
12
Tue
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
Categories: Education Slider Webinar
Dec
10
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/TimBenke-1.jpg)
Categories: Education Slider Webasts
Jan
7
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/jan.png)
Categories: Ed Day Education Slider
Feb
11
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Fink-Headshot2-scaled.jpg)
Categories: Ed Day Education Slider
Mar
1
Sun
![](https://www.rettsyndrome.org/wp-content/uploads/napa-race-2020.jpg)
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).- Register for the full or half marathon at https://napavalleymarathon.org/
- Half marathon Rett code (10% reg discount): RETTHALF2020
- Full marathon Rett code (10% reg discount): RETTFULL2020
- After registration, please visit Napa Valley team page to create your personal fundraising page.
- https://rettracer.everydayhero.com/us/napa-valley-2020-runners
- Note: You must login with an Everyday Hero account FIRST before you can join the ‘team’.
- Create & customize your fundraising page and share via social media and email with your contacts.
- Contact Jackie Ventura at [email protected] to order your Rett Racer t-shirt.
Categories: Special Events - Run/Walk
Mar
10
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Meir-Lotan.png)
Categories: Ed Day Education Slider
Apr
9
Thu
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
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
Apr 23 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/april.png)
Categories: Ed Day Education Slider
Apr
27
Mon
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
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
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
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
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