Mar
10
Tue
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Categories: Ed Day Education Slider
Apr
23
Thu
Apr 23 @ 1:00 pm
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Categories: Ed Day Education Slider
Jun
18
Thu
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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 MOREAug
11
Tue
Aug 11 @ 1:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/03ede092ac1b628d97e5e32798ef8417.jpg)
Categories: Education Slider Webasts Webinar
Oct
13
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Dominique-Pichard_crop-2.jpg)
Categories: Education Slider Webasts Webinar
Nov
15
Sun
Rett Education 2020
Communicate, Educate, Advocate 7-day online conference with international expert speakers Date: November 15-21, 2020 Details: Unlike physical conferences where you can end up sitting through content you just don't need, Rett Education 2020 – Communicate, Educate, Advocate is delivered entirely online. Dip in and watch the specific talks you want or catch them all. It’s up to you! All talks will be available to watch again or watch later, as long as you have registered. REGISTRATION & INFORMATION Categories: Ed Day Education Slider
Dec
5
Sat
Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting
Date: Sat, December 5, 2020 Time: 11:00 AM - 12:30 PM Are you wanting to understand 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? Perhaps you would like an opportunity to re-connect and re-center with your Rett community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Saturday, December 5, 2020, at 11am -12:30pm (CT). Join us as Rettsyndrome.org, and the Rett Clinic team at Vanderbilt Kennedy Center discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration Categories: Special Events - Meetings/Symposiums
Dec
8
Tue
Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Tristen Dinkel, RN about Cortical Visual Impairment (CVI) in Rett syndrome. Our loved ones with Rett syndrome often exhibit particular eye movements or gaze patterns. Is this a motor behavior or visual strategy? What do our children see? How do they process visual information?
Register now, and submit your questions. Pre-submitted relevant questions will be addressed, and there will be time for write-in questions during the session. REGISTER Our RettEd Webcasts are Free, but registration is required. RettEd Webcasts are recorded. When you register, you will receive a link to the recording within 1-2 days after the presentation. Rettsyndrome.org is committed to standing with you today, to fighting to transform your tomorrow. Check out our other upcoming webcasts, as well as an incredible library of past webcasts on multiple Rett topics: www.rettsyndrome.org/education.
![](https://www.rettsyndrome.org/wp-content/uploads/DinkelTristen-2015.jpg)
Categories: Education Slider Webasts Webinar
Feb
26
Fri
Are you wanting to better understand 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? Perhaps you would like to re-connect and re-center with your Rett syndrome community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting - live-streamed - on Friday, February 26, 2021, at 4pm -5:30pm Central time. Join us as Rettsyndrome.org, and the Rett Clinic team at UAB discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Information & Registration
Categories: Special Events - Meetings/Symposiums
Jul
28
Wed
![](https://www.rettsyndrome.org/wp-content/uploads/35ea51cb1f3f8303b1b6b8df18262bbf.jpg)
Aug
20
Fri
Join us for another Trivia Night with IRSF! You’ll have a chance to compete for prizes, test your trivia knowledge & support Rett syndrome at the same time!
- Date: Friday, August 20th at 7pm EST/ 6pm CST
- Space will be limited so check back for information on team registration.
- Sponsorship opportunities are available!
- Please direct any questions to Jackie Ventura at [email protected].
Categories: Special Events - Non-Fundraising Events
Dec
8
Wed
Occupational Therapy Strategies: Maximizing Hand Function + Feeding
People with Rett often have difficulty controlling hand movements, which can lead to frustration in using communication devices and participating in adapted recreation and many daily activities. Feeding in Rett patients can also be challenging because of decreased motor skills when chewing and swallowing as well as communication issues in relaying what they want. If you're facing either of these issues, finding a trained therapist who understands Rett is key to creating reasonable goals, managing expectations, and perhaps recovering gains lost during a regressive phase of Rett. Todd Levy and Emily Scott from Children's Hospital of Philadelphia and IRSF Center of Excellence will discuss strategies they've seen work in Rett patients and outline the criteria to look for in finding an occupational therapist that will meet your loved one's needs. Information & RegistrationMar
11
Fri
Mar 11 @ 10:00 am – 3:00 pm
Rett Syndrome Externally-Led Patient Focused Drug Development Meeting Date: Friday, March 11th, 2022 Time: 10am-3pm EDT Location: Online via video conference (meeting registrants will receive an email with a link to the meeting)
The Rett Syndrome Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting is our community’s one shot to provide the Food and Drug Administration (FDA) with insights to influence the development of new drugs to treat Rett. The International Rett Syndrome Foundation is co-hosting this event with the Rett Syndrome Research Trust. These organizations invite and encourage you to attend. Come and share about the impact of Rett syndrome on your family and how symptom improvements would affect you and your loved one’s quality of life. Together, we can make a difference for the future of Rett syndrome healthcare. Information & Registration
![](https://www.rettsyndrome.org/wp-content/uploads/EL-PFDD-Email.png)
Apr
26
Tue
Apr 26 – Apr 27 all-day
![](https://www.rettsyndrome.org/wp-content/uploads/22-Science-Meeting-Twitter-Post-760x425.png)
Apr
27
Wed
Apr 27 – Apr 30 all-day
![](https://www.rettsyndrome.org/wp-content/uploads/1894_IRSF_NtnlSummit_HmpgBNRRev_FLR-760x425.jpg)
Oct
21
Fri
Oct 21 @ 3:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/2022-Rett-Spectrum-Series-Banner.jpg)
Categories: Ed Day Education Slider
Oct
22
Sat
Oct 22 @ 8:00 am – 4:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/RettEd-Day_KKI_Website-1400x613-1.png)
Categories: Ed Day Education Slider
Apr
28
Fri
![](https://www.rettsyndrome.org/wp-content/uploads/GreatRettShootout.jpg)
Categories: homepage Special Events - General
Apr
29
Sat
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May
8
Mon
![](https://www.rettsyndrome.org/wp-content/uploads/Charamella-Golf_Website.png)
![](https://www.rettsyndrome.org/wp-content/uploads/Charamella-Golf-Logo.jpeg)
Categories: homepage Special Events - Golf Tournaments
May
23
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Physician-Panel.png)
- Dr. Tim Benke, Professor of Pediatrics, Pharmacology, & Neurology at the University of Colorado/Children's Hospital Colorado
- Dr. Robin Ryther, Director of the Rett Spectrum Clinic at Washington University School of Medicine
Categories: Education Slider homepage
Jun
9
Fri
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Categories: homepage Special Events - Golf Tournaments
Jun
22
Thu
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Already registered?
Make sure to RSVP "Going" on the Facebook event page to stay up to date on deadlines, information, and to make plans to connect with other families! Sponsored by:![](https://www.rettsyndrome.org/wp-content/uploads/ACADIA-Logo-2.png)
Categories: Ed Day Education Slider
Jul
15
Sat
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Categories: homepage Special Events - General
Aug
5
Sat
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Categories: Ed Day Education Slider homepage
Sep
9
Sat
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Categories: homepage Special Events - General
Sep 9 @ 9:00 am – 5:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/UTSW_Website-Event-Header-1400-x-613.png)
Categories: Ed Day Education Slider homepage
Date: Saturday, September 9, 2023 Time: 10:00 a.m. - 2 p.m. Eastern Location: Buffalo Creek Nature Park (154 Monroe Road, Sarver, PA 16055) Event Chairs: Terre Gray and Kati Gray (Contact Email) REGISTER & MORE INFORMATION The Strollathon is a nationwide IRSF fundraiser that brings together local communities to go ALL IN towards treatment and a cure for Rett syndrome. Since 2004, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $15M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Categories: homepage Special Events - Strollathons
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Categories: homepage Special Events - Strollathons
Sep
23
Sat
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