Jun
4
Tue
Mark was a devoted husband, father and friend that touched many lives through his enthusiasm and love of life. Every job, school, team or organization that he was involved with became a part of him. He had a great ability to connect with people and shared his passion for life with everyone that he met. As a father of a daughter with Rett syndrome, Mark did everything he could to make her life better. It is in his honor that we gather his family and friends to celebrate a life well lead and to give to a cause that was close to Mark’s heart. 11:00 AM - 12:00PM Golf Registration & Lunch 12:30 PM Shotgun Start 5:00 PM Doors Open for Dinner * Lunch, 18 Holes of Golf, Driving Range, Tournament T-shirt, Dinner, Prizes, Raffle Table, Silent Auction
Sign up as a foursome or individual
PLAY GOLF All sponsors will need to provide company logo/artwork via email to Deb McLaughlin [email protected]. All payments and artwork due April 19, 2019. DINNER & SPONSORSHIP If you can't attend the event you can still make a general donation. DONATE Categories: Special Events - Golf Tournaments
Jun
11
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/suzi3_170crop.png)
Categories: Previous Webinars Webinar
Jun
22
Sat
Rettsyndrome.org Ed Day hosted by TBD – Boston, MA
Jun
28
Fri
Join us for a great time supporting a great cause, we hope to see you on June 28, 2019! The Rip it for Rett, hockey themed golf tournament is a blast, a great round of golf on a great course with really awesome people.
Categories: Special Events - Golf Tournaments
Jul
9
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Skinner-and-Warren.png)
Categories: Education Slider Webinar
Jul
20
Sat
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!Sep
10
Tue
Sep 10 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/huda-zoghbi-2017.jpg)
Categories: Education Slider Webinar
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
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
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
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
9
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/03ede092ac1b628d97e5e32798c6e59f.jpg)
Categories: Education Slider Webinar
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
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
Oct
13
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Dominique-Pichard_crop-2.jpg)
Categories: Education Slider Webasts Webinar
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