Oct
16
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
Categories: Special Events - Strollathons
Oct
23
Sat
![](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.
![](https://www.rettsyndrome.org/wp-content/uploads/RS_StrollathonCirclesArt_1550178325140.png)
Categories: Special Events - Strollathons
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
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)
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
24
Sat
![](https://www.rettsyndrome.org/wp-content/uploads/Strollathon_Web-Event-1000-×-438-px.png)
Categories: Special Events - Strollathons
![](https://www.rettsyndrome.org/wp-content/uploads/Strollathon_Nebraska-1.png)
Categories: Special Events - Strollathons
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
2
Sun
![](https://rettsyndrome.org/wp-content/uploads/Strollathon_Web-Event_Minnesota.png)
Categories: Special Events - Strollathons
Oct
8
Sat
![](https://rettsyndrome.org/wp-content/uploads/Strollathon_Web-Event_Cincinnati.png)
Categories: Special Events - Strollathons
![](https://www.rettsyndrome.org/wp-content/uploads/Strollathon_Web-Event_StLouis.png)
Categories: Special Events - Strollathons
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
![](https://www.rettsyndrome.org/wp-content/uploads/Strollathon_Web-Event_SoCal.png)
Categories: Special Events - Strollathons
Oct
30
Sun
![](https://www.rettsyndrome.org/wp-content/uploads/Classy_Facebook-Sharing-Image-1200-×-630-px-760x425.png)
Categories: Special Events - Strollathons
Nov
5
Sat
![](https://rettsyndrome.org/wp-content/uploads/Classy_Facebook-Sharing-Image-1200-×-630-px-1.png)
Categories: Special Events - Strollathons
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
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
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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