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
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
Oct
13
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Dominique-Pichard_crop-2.jpg)
Categories: Education Slider Webasts Webinar
Oct
24
Sat
Raise a Glass Against Rett: Virtual Edition
![](https://www.rettsyndrome.org/wp-content/uploads/1661_RS_2020RAGFacebkInstaPost_1080x1080_F.jpg)
Categories: Special Events - General
Dec
5
Sat
Hannah Grace Carpenter
Artist Reception Date: December 5 Time: 2:00-4:00pm Location: 148 North Main Street, Downtown Historic Mooresville Important Information Categories: Special Events - General
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
Jan
19
Tue
Date: Tuesday, January 19 Time: 1-2:30pm (EST)
For the last 16 years, the NIH-funded Natural History Study for Rett Syndrome has been collecting data from over 1000 Rett families. Hear from NHS Principal Investigators, Drs. Alan Percy, Jeffrey Neul, and Eric Marsh on how your data has helped change the management of children and adults with Rett syndrome and improved longevity in those with Rett syndrome. Learn how you can still take part in the NHS before its completion in July 2021. And find out how your participation in the new Rett Clinical Disease Registry, launching in August 2021, will benefit Rett syndrome drug development. Register for FREE, and submit your questions to be addressed during the webinar. Once registered, you will receive a confirmation email containing information about joining the webcast. Information & Registration
![](https://www.rettsyndrome.org/wp-content/uploads/dbe1e45428546dd7827f47db67da3c31.jpg)
Categories: Education Slider Webinar
Feb
9
Tue
Join us Tuesday, February 9, 2021, at 1:00 pm EST to learn how you can empower your care team to provide the best quality care for
your loved one with Rett syndrome. Dr. Tim Benke from Colorado Children’s Hospital, Katie Hale, NP from Katie’s Clinic at UCSF Oakland, and Melissa Kennedy, Executive Director at Rettsyndrome.org, will unpack the Rett Syndrome Primary Care Guidelines. You’ll learn how to use this evidence-based tool in partnership with your child’s physicians and specialists. The Primary Care Guidelines provides suggested visit schedules by clinical area of assessment, specific concerns to look for, and timelines for follow up appointments. To ensure the best care for your loved one with Rett, join us on February 9 to take a deeper dive. We encourage physicians and health care providers to attend this webinar; invite them to register as well! Information & Registration
![](https://www.rettsyndrome.org/wp-content/uploads/bb13902f718dca55f81676ee3d9aa2c5.jpg)
Categories: Education Slider Webinar
Feb
27
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/62cf7f7c-4412-43d0-9315-227b6b5ba0d2.png)
Test your trivia knowledge and support Rett syndrome!
Looking for something fun to do this winter while stuck inside and want to support Rettsyndrome.org at the same time? Get your thinking caps on, gather some friends (virtually) and join us for our winter Trivia Night Virtual Showdown fundraiser! Date: Saturday, February 27 Time: 7pm EST Price: $100 (for a group of 10) Details: Space is limited as we are capping out at 20 groups of 10. The ticket purchaser is the 'team captain' and will need to fill out a link after purchasing tickets with the team member names & email addresses. Please direct any questions to Jackie Ventura at [email protected] Information & Registration Categories: Special Events - General
Mar
9
Tue
Communication is one of Rett syndrome’s biggest challenges. As such, individuals with Rett struggle to connect, build relationships, and make their wishes known. This critical RettEd webcast can help, no matter where a person is on their Rett journey, whether newly diagnosed or an adult who is no longer receiving services. Theresa Bartolotta, PhD, CCC-SLP, along with a speech therapist and parent, will unpack The Communications Guidelines so families, physicians, and caregivers will know how to use this important tool in real-life situations. They’ll share how they’ve implemented its strategies to enhance communication, explain critical information, and answer your questions. Please submit your questions early, and we’ll also take a few during the webcast as time allows. Pre-registration is required. Order the Communication Guidelines handbook today - https://www.rettsyndrome.org/communications-guidelines/ Information & Registration
Categories: Education Slider Webinar
Apr
13
Tue
We’ve learned a lot since the ‘80s—and it’s time to set the record straight! Dr. Bernard Suter of Texas Children’s Hospital will share what we know about males with Rett, males with MECP2 duplication, and current and future study options. We’ll also explore why males have not been included in clinical trials so far and if males will be approved for future Rett treatments. Dr. Suter will discuss a new biomarker study specifically for males with MECP2 mutations. Finally, we’ll share how IRSF advocates for males with industry partners. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required. Information & Registration
Categories: Education Slider Webinar
Apr
23
Fri
How do parents and caregivers recognize and treat pain in a loved one with Rett, especially if communication is a challenge? This RettEd can help! Dr. Tim Feyma and Dr. Art Beisang of Gillette Children's, and Dr. Scott Schwantes of Children's Minnesota, will address the tools you need to identify pain in your loved one and how to treat their pain. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required. If you missed Pain Part 1 with Univ of MN Researcher Dr. Frank Symons, feel free to View it here prior to April 23rd: https://www.youtube.com/watch?v=XR0uAlsYKmg Information & Registration
Categories: Education Slider Webinar
Apr
30
Fri
![](https://www.rettsyndrome.org/wp-content/uploads/GreatRettShootout-1.jpg)
Categories: Special Events - General
Jun
15
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Dominique-Pichard_crop-2-150x150.jpg)
Categories: Education Slider Webinar
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
Sep
1
Wed
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
Sep
12
Sun
Rev It for Rett Syndrome
In Honor of Maylee Stump
![](https://www.rettsyndrome.org/wp-content/uploads/Screen-Shot-2021-07-26-at-9.16.16-AM.png)
Categories: Special Events - General
Sep
25
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
- Fundraising pages are now open to create teams and help us overpower Rett.
- On Saturday, Sept 25th, plan to Stroll your way. Stroll your local neighborhood; decorate your car and drive around town to spread awareness!
- Consider asking your school or employer to have a special day to wear purple and collect donations!
- Event Chairs: Jen & Jim Magato ([email protected]) and Brittney Gibson ([email protected])
- Follow us on Facebook for continued updates & more fun!
Oct
9
Sat
Throw for a Cure
Date: Saturday, October 9th, 2021 Location: Racks Pub 7 Grill 2021 N Black Horse Pike Williamstown, NJ Time: 11:00am Join us for a cornhole tournament benefitting Macie Fordyce and all those who bravely battle Rett syndrome. This fun filled event will have cornhole, a silent auction and prizes! More Information Categories: Special Events - General
Oct
16
Sat
Eat well and do good; support Rett Gets Rocked on Saturday, October 16th, 2021 at Noodles & Company. Whether you dine in or get take out from the Richmond Heights, MO location, 30% of your order will benefit IRSF and the Rett Gets Rocked event. Be sure to show the flyer when ordering to qualify! Noodles & Co: 1624 S Handley Rd, Richmond Heights MO For any questions, contact Jay Murray at [email protected] More Information
Categories: Special Events - General
Oct
19
Tue
Bingo for Rett
Date: Tuesday, October 19th at 6:30pm Location: Sparks American Legion Hall, 730 4th St, Sparks, NV 89431 Get your bingo cards and markers ready as we play Bingo for Rett this October! Enjoy a fun-filled evening with bingo, dinner, non-alcoholic drinks and dessert. Your ticket also includes two bingo cards to be used for 5 rounds. Information & Registration Categories: Special Events - General
Oct
23
Sat
Be sure to support Jay Murry, avid Rett Racer & supporter as he takes on his 4th Annual Rett Gets Rocked initiative. Over the past three years, nearly $14,000 have been raised—split between IRSF and the Rett Spectrum Clinic at St. Louis Children’s Hospital. Rett Gets Rocked combines Jay’s love for running ultramarathons with the intent to help find a cure for Rett syndrome. In 2021, Jay will run 100 miles and has one other big goal--to help bring a cure of Rett syndrome to those who battle it every day. To support Jay in his efforts, go cheer him on at Wash-U on Sat 10/23 and 10/24. More details can be found at: https://rettracers2021.funraise.org/fundraiser/jay-murry
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
- Fundraising pages now open to create teams & personal pages for the virtual Strollathon.
- Event Chairs: Sherri Brady
- Follow us on Facebook for more event info & updates.
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