Events are one of the best ways to get involved with International Rett Syndrome Foundation and play an integral part in funding research for treatment and a cure for Rett syndrome. Events are fun, help raise awareness, and connect you to our community of amazing families. Participating in an event (or starting your own) will have a direct impact on the lives of many people affected by Rett syndrome. Whether you tee off at a golf tournament or dance at a gala, there is something for everyone, all year long! Find an event near you or contact us to start your own!
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 Join us for the 19th Annual SoCal Strollathon! Join us virtually this Fall as you Stroll in your neighborhood or host a picnic to help overpower Rett. We will host a live event via Zoom on Saturday, October 23rd, 2021 at 12 noon PST. Please check back soon for more details. Join us for the 14th Annual St. Louis Strollathon Fall 2021! Fundraising pages now open to create teams & personal pages for the Strollathon. Date: November 6, 2021 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! Date: Wednesday, November 10, 2021 Registration is free but required. Submit your questions when you register. International Rett Syndrome Foundation’s educational programming is made possible through a We’re gearing up for the ASCEND 2022 Rett Syndrome National Summit in Nashville! Designed to unite us as a community, this event will bring together parents, families, clinicians, researchers, and Rett organizations around the world. Together we can overcome the challenges of Rett syndrome and reach the summit of hope and healing–a world without Rett syndrome. Dates: 28th Sept to 1st Oct 2022 9th World Rett Syndrome Congress has been postponed due to COVID until 2022. Congress venue Presenters Work continues on building the Congress website https://rettworldcongress.org to a point where it will meet the information needs of potential attendees. Online registration for the Congress is now open which may be of particular interest to Australian families who have included, or wish to include, coverage of the registration fees in their National Disability Insurance Scheme (NDIS) plans. https://rettworldcongress.org An online abstract submission portal has been completed but won’t be available for submissions until early 2022.
We miss you and can’t wait to be together again. We hope to have a live, in-person Stroll on Saturday, October 23rd, 2021- more details to come! Until then, stay safe & be well.
Event Chairs: Joyce Opinsky, Amy Kreher & Amanda Sommer ([email protected])
Follow us on Facebook for continued updates.2nd Annual Raise a Glass for Rett Virtual Gala
Time: 8:00pmNext 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!
Time: 4:30pm
sponsorship from ACADIA Pharmaceuticals, Taysha Gene Therapies, and Novartis Gene Therapy.
GAYLORD OPRYLAND RESORT & CONVENTION CENTER
April 27-30, 2022
9th World Rett Syndrome Congress in Australia
The QT Hotel, Gold Coast, which is located in Surfers Paradise, Queensland, will remain as the Congress venue.
Presenters who originally accepted RSAA’s invitation to speak at the Congress are being notified of the latest postponement and will be reinvited. Hopefully, the revised dates will not affect their availability.
Congress website
