Oct
19
Sat
Date: Saturday, October 19th, 2024 Time: 1pm CT Location: The JCC - St. Louis (2 Millstone Campus Dr. St. Louis, MO 63146) Event Chairs: Joyce Opinsky, Amy Kreher, & Amanda Sommer (Contact Email) REGISTER TODAY! Make sure to follow the event on Facebook to stay up to date! 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 nearly $17M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Categories: homepage Special Events - Strollathons
Oct
24
Thu
Date: Thursday, October 24th Time: 1-2 pm ET REGISTER NOW Epilepsy Treatments in Rett Syndrome The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session with a goal of educating families on an approach to the treatment of epilepsy in Rett syndrome. Guest Speaker: Robin Ryther, M.D., Ph.D., Associate Professor, Pediatric Epilepsy; Director, Rett Spectrum Clinic; Division of Pediatric and Developmental Neurology; Pediatric Epilepsy Center at Washington University and St. Louis Children's Hospital Department of Neurology This session will include a discussion of medication options but also non-medication options including special diets, surgical options, and supplements such as CBD oil. Dr. Ryther will also review special circumstances specific to Rett Syndrome to be considered. This information is appropriate for patients with Rett syndrome of all ages. Thank you to our RettEd Empowerment Sponsors, presenting sponsor Acadia Pharmaceuticals and diamond sponsor Taysha Gene Therapies, for helping IRSF provide educational resources and support to families affected by Rett syndrome. Medical Disclaimer: All information, content, and material provided in this webcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
Categories: Education Slider homepage Webinar
Oct
26
Sat
Date: Saturday, October 26th, 2024 Time: 12-4 p.m. PT Location: Whittier, CA Event Chair: Sherri Brady (Contact Email) LEARN MORE & REGISTER Make sure to follow the event on Facebook to stay up to date! 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
Oct
27
Sun
Date: Sunday, October 27, 2024 Time: 1-4 p.m. CT Location: Mary Heads Carter Park (2320 Heads Lane, Carrollton, TX 75006) Event Chairs: Vanessa Peace, Donna Williams, Lynne Buchwald & Leone Bromley (Contact Email) REGISTER TODAY! 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 nearly $17M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.
Nov
2
Sat
Date: Saturday, November 2, 2024 Time: Registration starts at 10:30 a.m. | Stroll starts at 1:00 p.m. Location: West Melbourne, FL Event Chair: Henry Perez (Contact Email) REGISTER TODAY! Make sure to follow the event on Facebook to stay up to date! 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
Join us for this free community event supporting Chloe and all of our Rett angels. Rise Up for Rett will feature live music from local artists, a kid's zone, activity booths, vendors, food trucks, a silent auction, Rett expert presenters and much more. Donations will support local Rett families, Rett awareness and Rett research. We hope to see you there! Click on the link below for the official event flyer. Rise up for Rett flyer 2024
Nov
10
Sun
Date: Sunday, November 10, 2024 Time: 12:30 p.m. ET Location: Watermark Country Club (1600 Galbraith Ave SE, Grand Rapids, MI 49546) Join us for a magical afternoon honoring some of Michigan's Rett Royalty and featuring Disney characters from Olivia Grace & Company. The event includes photo and autograph opportunities plus a special gift for our princes and princesses. A fancy tea party luncheon is included with your ticket purchase. Cash bar optional. RESERVE YOUR SEAT!
Categories: homepage Special Events - General
Date: Sunday November 10, 2024 Time: 5-9 p.m. CT Location: Houston Country Club (1 Potomac Dr, Houston, TX 77057) Get Ready to Raise your Glass! Join us for the 5th Annual Houston Raise a Glass for Rett Gala brought to you by the International Rett Syndrome Foundation (IRSF) and Johnson Supply. This year we will be at the Houston Country Club on Sunday, November 10th. We hope to exceed our goal of raising $185,000 for IRSF, and we’re grateful for your interest in supporting this important event.
Categories: homepage Special Events - General
Nov
16
Sat
Date: Saturday, November 16, 2024 Time: 9:00 a.m. - 5 p.m. ET (registration opens at 8:00a) Location: Children's Hospital of Philadelphia Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more. LEARN MORE & REGISTER
Categories: Ed Day Education Slider homepage
Nov
20
Wed
Join Us for "Ally hour" – Your Guide to Getting the Most Out of My Rett Ally! Date: November 20 Time: 8 PM EST Discover how My Rett Ally is helping families just like yours manage care and save time! Join us for "Ally Hour," a free, interactive webinar designed to give you an inside look at everything My Rett Ally has to offer. In this exclusive event, the developers behind the app will walk you through key features, explore the unique ways families are using My Rett Ally daily, and provide tips and tricks to help you make the most of it. Plus, get an exciting sneak peek at some of the new features on the way! What to Expect:
- In-Depth Feature Overview: A complete guide to My Rett Ally's tools for managing care, connecting with support, and keeping track of health.
- User Stories & Benefits: Hear how other families are using the app in their caregiving routines and how it’s changing their day-to-day lives.
- Tips & Tricks: Pro tips for navigating the app like a pro and discovering all its features.
- Your Voice Matters: Have feedback or ideas? We’re all ears!
Dec
4
Wed
On Wednesday, December 4 from 11:00 a.m. – 4:30 p.m. ET., the Rett community is invited to join the FDA Center for Biologics Evaluation and Research (CBER) for a public patient listening meeting to better understand patient and care partner perspectives on enrollment into gene therapy clinical trials. The objective of this meeting is to understand what caregivers of patients in the pre-symptomatic or early stages of disease take into consideration when deciding whether to enroll in a gene therapy clinical trial and potentially receive an investigational gene therapy product. This meeting is free and open to the public; however, registration is required. LEARN MORE & REGISTER
Dec
16
Mon
Dec 16 @ 5:00 pm – 8:00 pm
Apr
5
Sat
Date: Saturday, April 5, 2025 Time: All Day Location: Nationwide Children's Hospital (Columbus, Ohio) Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more. MORE INFORMATION COMING SOON!
Categories: Ed Day Education Slider homepage
May
3
Sat
Date: Saturday, May 3, 2025 Time: All Day Location: Children's Hospital Los Angeles (Los Angeles, CA) Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more. MORE INFORMATION COMING SOON!
Categories: Ed Day Education Slider homepage
May
17
Sat
Date: Saturday, May 17, 2025 Time: 4 p.m. ET Location: The Grove in Newport, ME More information coming soon!
Categories: homepage Special Events - General
Jun
9
Mon
Date: June 9-11, 2025 Time: All Day Location: Boston, Massachusetts MORE INFORMATION COMING SOON! The scientific community is invited to join us in Boston for the 2025 IRSF Rett Syndrome Scientific Meeting! The IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2.5-day meeting, attendees representing academia, industry, and governmental agencies will share their latest research advances and discuss ways to leverage learning in the lab to be rapidly deployed in the clinic. The IRSF Rett Syndrome Scientific Meeting is the only annual, global, and comprehensive research meeting focused exclusively on Rett syndrome.
Jul
9
Wed
Date: July 9-12, 2025 Location: San Diego Area, California (Carlsbad & Oceanside) IRSF’s RettAway is a destination vacation for families to spend time together and build connections with other members of our Rett community. It’s not a conference – there are no meetings or educational presentations. It's an exclusive opportunity for your family to have fun together in a location that understands the challenges and joys of caring for a loved one with Rett syndrome. MORE INFORMATION COMING SOON!
Categories: Ed Day Education Slider homepage
Sep
13
Sat
Date: Saturday, September 13, 2025 Time: All Day Location: Boston Children's Hospital (Boston, MA) Our RettEd Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more. MORE INFORMATION COMING SOON!
Categories: Ed Day Education Slider homepage
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