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
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
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
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
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
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
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
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
Apr
30
Fri
![](https://www.rettsyndrome.org/wp-content/uploads/GreatRettShootout-1.jpg)
Categories: Special Events - General
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.
Nov
6
Sat
2nd Annual Raise a Glass for Rett Virtual Gala
Date: November 6, 2021 Time: 8:00pm Be inspired by stories from our community, hear from Executive Director Melissa Kennedy and Chief Science Officer Dominique Pichard, learn about the incredible work that the International Rett Syndrome Foundation is doing to accelerate research and empower families, and much more. Before the evening is over, we hope to surpass our goal of $200,000, getting us closer to a world without Rett. You can check our progress here, as fundraising is already underway! Information & Registration Categories: Special Events - General
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 & RegistrationFeb
27
Sun
Shop for Good: IRSF & Kendra Scott in Liberty Township OH
Date: Sunday, Feb 27th, 2022 Time: 12-3pm Location: Kendra Scott, 7560 Gibson Street, Liberty Township OH 45069 Come shop with IRSF at Kendra Scott for a chance to restock your jewelry box (or gifts for others) while supporting the International Rett Syndrome Foundation. A portion of each sale will go back to IRSF to help accelerate research towards treatments and ultimately a cure for Rett. If you aren’t local, you can still shop online. This is a great opportunity to help support IRSF during Rare Disease Day! Please direct any questions to Jackie Ventura at [email protected].![](https://www.rettsyndrome.org/wp-content/uploads/Rett-Syndrome-KGB.png)
Categories: Special Events - General
Mar
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
9
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/2021-Golf-Fore-a-Cure_Web_Banner.png)
Golf Fore a Cure
When | Saturday, April 9, 2022 7:00 AM Registration 8:00 AM Shotgun Start Where | Cleveland Heights Golf Course Contact Karli Hughes (863) 899-0784 or [email protected] Join us for the 5th Annual Golf Fore a Cure benefiting the International Rett Syndrome Foundation. Sponsor opportunities available! Information and Registration Subscribe to filtered calendar