Events are one of the best ways to get involved with Rettsyndrome.org 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!
Communication is one of Rett syndrome’s biggest challenges. As such, individuals with Rett struggle to Theresa Bartolotta, PhD, CCC-SLP, along with a speech therapist and parent, will unpack The Pre-registration is required. Order the Communication Guidelines handbook today – We’ve learned a lot since the ‘80s—and it’s time to set the record straight! Dr. Bernard Suter of Texas Children’s Hospital will share what we know about males with Rett, males with MECP2 duplication, and current and future study options. We’ll also explore why males have not been included in clinical trials so far and if males will be approved for future Rett treatments. Dr. Suter will discuss a new biomarker study specifically for males with MECP2 mutations. Finally, we’ll share how IRSF advocates for males with industry partners. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required. How do parents and caregivers recognize and treat pain in a loved one with Rett, especially if communication is a challenge? This RettEd can help! Dr. Tim Feyma and Dr. Art Beisang of Gillette Children’s, and Dr. Scott Schwantes of Children’s Minnesota, will address the tools you need to identify pain in your loved one and how to treat their pain. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required. If you missed Pain Part 1 with Univ of MN Researcher Dr. Frank Symons, feel free to View it here prior to April 23rd: https://www.youtube.com/watch?v=XR0uAlsYKmg We are excited to be able to host the event this Spring! We will be following the guidelines of the CDC and may have to implement social distancing and face coverings dependent upon the CDC guidelines in place at the end of April. Come out and break some clays with us as we raise money for a very special cause. 100% of all tournament proceeds go to RettSyndrome.org! Experienced and Novice shooters are welcome! Date: April 30, 2021 Please join us for the legendary Samantha Corpus Golf Tournament, On Tuesday July 13th at The Blackhawk Country Club, as we will be hosting our 15th and Final Tournament. Due to the Pandemic we had to postpone the tournament last year.
connect, build relationships, and make their wishes known. This critical RettEd webcast can help, no
matter where a person is on their Rett journey, whether newly diagnosed or an adult who is no longer
receiving services.
Communications Guidelines so families, physicians, and caregivers will know how to use this important
tool in real-life situations. They’ll share how they’ve implemented its strategies to enhance
communication, explain critical information, and answer your questions. Please submit your questions
early, and we’ll also take a few during the webcast as time allows.
https://www.rettsyndrome.org/communications-guidelines/
Details: $750 per 4-man team
$200 per individual
Mulligan Package: 6 Shots for $25
Carts included, ammunition not included
You Can’t Miss the Final Samantha Corpus Golf Tournament
Samantha’s Farewell 15
July 13, 2021
In spite of all the uncertainty the outpouring of love and support continued and many of you asked and hoped that we would be able to conclude this epic event in grand style.