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
22
Wed
Sep 22 @ 1:00 pm
Why should your pharmacist be an active partner in your child's care team? Join us to hear directly from pharmacists who are Rett family members that understand the issues and challenges we face when it comes to getting our loved ones to take their medicine. You'll walk away from this RettEd learning: • How medicines are formulated and why • How to organize your loved one's medication management (especially if they have swallowing issues or a g-tube), • How to improve communication with prescribing doctors • How to get help with securing insurance authorizations, and more! Information & Registration
Categories: Education Slider
Oct
9
Sat
2nd Annual Run for Rett 5k
Date: Saturday, October 9th, 2021 Location: Bradenton, FL We are very excited to have the Second Annual Run for Rett 5K to help spread awareness about Rett Syndrome. This year plans to be quite exciting with donations going to International Rett Syndrome Foundation as well the We Carry Kevan crew here to help any families who would like to join in the area with a child afflicted with Rett Syndrome. There will be food, prizes, and much more! Registration Make a Donation You can also check out our Facebook event for more information: https://www.facebook.com/events/261650685291726 Please direct any questions to event chair, Artie Phillips at [email protected] Categories: Special Events - Run/Walk
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
Nov
10
Wed
Next Level Nutrition
Getting proper nutrition is especially challenging for those with Rett. The news is always filled with information on special diets, allergies, and food sensitivities, but how do you sift through it? How do you decide what’s best for your loved one with Rett? This interactive webinar with parent panel and dietician expert Suzanne Geerts can help! Date: Wednesday, November 10, 2021 Time: 4:30pm Registration is free but required. Registration & Information Submit your questions when you register. International Rett Syndrome Foundation's educational programming is made possible through a sponsorship from ACADIA Pharmaceuticals, Taysha Gene Therapies, and Novartis Gene Therapy. Categories: Education Slider Webinar
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 & RegistrationJan
11
Tue
Music Through Our Ears and Our Hands
Date: January 11, 2022 Time: 1pm Eastern Time Music Therapy: Neuroscience; Clinical Goals; Practical How-To's We know our children have a strong affiliation to music. They have their favorites. It is often a go-to to calm, focus, or motivate them. Why? In this RettEd, we will hear from professionals and parents about the importance of Music Therapy in Rett syndrome. And how does Music Therapy happen in Rett differently than traditional MT? How might you get it going in your everyday life or through an online music group? You will takeaway this and much more. Information & Registration Categories: Education Slider Webinar
Jan
27
Thu
Jan 27 @ 3:00 pm
Join IRSF and RSRT on Tuesday, January 27, 2022 from 3 to 4 pm EST for a community webinar to discuss the upcoming March 11, 2022 Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on Rett syndrome.
Discover why your voice is critical to inform the development and review of new drugs to treat Rett syndrome. Come learn how you can make your voice heard as a participant on March 11th. Learn more about the meeting with guest speakers:- Larry Bauer, RN, MS, Sr. Regulatory Drug Expert, Hyman, Phelps, & McNamara, PC
- James Valentine, JD, MHS, Senior Associate, Hyman, Phelps & McNamara, PC
Categories: Education Slider Webinar
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
23
Sat
RUN FOR RETT
Saturday, April 23, 2022
IN PERSON EVENT!!! & VIRTUAL EVENT!!! Location: Busse Woods, Grove #28 Elk Grove, IL Schedule: 5K – 8:30 am (on-site registration begins at 7:30) 1 mile fun run – 9:00 am HOW TO RUN VIRTUALLY Register at raceroster.com Run anytime between April 16 and April 23, 2022. Choose your own course Most importantly….have fun and enjoy the time outside! To register for either event visit raceroster.com First 200 participants will receive an official Run for Rett T-Shirt! Contact Person: Diane Ross, Email: [email protected], Tel: 847-524-7540 Categories: Special Events - Run/Walk
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)
Jun
4
Sat
![IRSF's 3rd Annual Virtual Summer 5K](https://www.rettsyndrome.org/wp-content/uploads/Website_Virtual-5K_RETT-RACERS-1400-×-758-px.png)
The Virtual Summer 5K is back this June!
Join our community around the world right from your local neighborhood, trail, or treadmill. Whether you run, walk, or stroll, you'll be going ALL IN for a cure!
Why Lace Up for Rett?
- It raises money for Rett syndrome research. Once you raise $200, we'll send you a Rett Racer t-shirt.
- It unites us as a community. Share your photos on race day to our Facebook Event Page or your personal fundraising page. Use the hashtag #rettracers.
- It's FUN! Whether you're a seasoned runner or on a stroll with your family, everyone can join in on the fun - anywhere and at any time!
THE DETAILS Saturday, June 4th, 2022 Anywhere you are! No registration fee; however, fundraising is encouraged
Contact Jackie Ventura at [email protected] with questions.
SIGN-UP OR LEARN MORE Categories: Special Events - Run/Walk
Jul
26
Tue
Jul 26 @ 1:00 pm – 2:00 pm
Categories: Education Slider Webinar
Aug
1
Mon
Aug 1 @ 3:00 pm – 4:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/FDA-RettEd-1400-×-613-px.png)
Categories: Education Slider Webinar
Sep
27
Tue
Sep 27 @ 1:00 pm – 2:00 pm
![](https://rett.wpengine.com/wp-content/uploads/Lifecare-Planning_webevent.png)
- Legal Planning: Special Needs Trusts, Letter/Memorandum of Intent, Guardianship
- Financial Planning: How to fund a Special Needs Trust, ABLE accounts, and more
- Benefit Planning: Finding and accessing federal benefits like SSI & SSDI, Medicaid, Waivers, etc.
- Defining Your Replacement Team: What happens when you can no longer provide direct care alone?
Categories: Education Slider Webinar
Oct
15
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/Screen-Shot-2022-08-26-at-1.59.38-PM.png)
Categories: Special Events - Run/Walk
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
Dec
6
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/RettEd-3-Web-Header.png)
- Paul and Janelle Jochim, parents to Jill (age 46)
- Megan Ladenburger and Mom Shanna Sowers, sister and mom to Brittany (age 34)
- Theresa Bartolotta, mom to Lisa (age 33)
- Moderator: Paige Nues, IRSF Family Empowerment Director and mom to Katie (age 20)
- Special Guest: Sheila Lullo, Special Projects Coordinator of Quality Outcomes at Clearbrook in Illinois, a provider of community-based residential options, day programs, and more to adult individuals with special needs.
Categories: Education Slider Webinar
Apr
22
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/Run-for-Rett.png)
Categories: Special Events - Run/Walk
May
11
Thu
![](https://www.rettsyndrome.org/wp-content/uploads/Parent-Panel_Website-Event.png)
- Silvia Baker, parent to Olivia, age 17
- Patty Mevis, parent to Kira, age 16
- Erica Waggenspack, parent to Kerrigan, age 5
Categories: Education Slider
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
22
Thu
![](https://www.rettsyndrome.org/wp-content/uploads/Event-Header.png)
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
Aug
5
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/UCSF_Website-Event-Header-1400-x-613.png)
Categories: Ed Day Education Slider homepage
Sep
9
Sat
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
Sep
30
Sat
Sep 30 @ 9:00 am – 5:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/Montefiore_Website-Event-Header-1400-x-613.png)
Categories: Ed Day Education Slider homepage
Oct
6
Fri
Oct 6 @ 3:00 pm – 6:00 pm
![](https://www.rettsyndrome.org/wp-content/uploads/WUSM-Ed-Day.png)
Categories: Education Slider
Jun
18
Tue
![](https://www.rettsyndrome.org/wp-content/uploads/Event-Header_ScineceMtg_2024.png)
![](https://www.rettsyndrome.org/wp-content/uploads/Acadia_Reg_rgb_primary_gradient.png)
![](https://www.rettsyndrome.org/wp-content/uploads/NeuroGene_Logo_®_Dark-Green-01_transparent-background.png)
![](https://www.rettsyndrome.org/wp-content/uploads/Taysha_Inline_Full-Color_RGB_300.png)
Bronze Sponsors:
Anavex Life Sciences
DepYmed
Categories: homepage Special Events - Non-Fundraising Events
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