Events

Date: Monday, September 25, 2023 Time: Registration 9 a.m. | Shotgun Start 10:30 a.m. Location: Thousand Oaks Golf Club (4100 Thousand Oaks Drive NE, Grand Rapids, MI) Event Chair: Rebecca & Andrew Visser (Contact Email) REGISTER & MORE INFORMATION Join the Visser family for their inaugural Goals Fore Gracie Golf Tournament in honor of their 4-year-old daughter with Rett syndrome, Gracie. Sponsorships, foursomes, and individual tickets are available now!

Date: Saturday, September 30, 2023 Time: 9:00 a.m. - 5 p.m. ET (registration opens at 8:30a) Location: The Children's Hospital at Montefiore (Bronx, New York) 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. REGISTER & MORE INFORMATION

Date: Friday, October 6, 2023 Time: 3:00 – 6 p.m. CT Location: Washington University School of Medicine or Virtually Download the Registration Flyer Register now for the Annual Family Education Symposium, part of the Rett Spectrum Conference Series brought to you by Washington University School of Medicine and Children's Hospital St. Louis. It's free to attend the symposium, but registration at the link below is requested. REGISTER & MORE INFORMATION

Date: Monday, October 16, 2023 Time: Registration 8 a.m. | Shotgun Start 10:00 a.m. Location: Falcon Ridge Golf Course (20200 Prairie Star Pkwy, Lenexa, KS 66220) Event Chair: Sam Evans (email) & Haley Douglass (email) REGISTER & MORE INFORMATION Join the Douglass and Evans family for their inaugural On the Ridge for Rett Golf Scramble in honor Vivian who has Rett syndrome. Sponsorships, foursomes, and individual tickets are available now!

Date: Saturday, October 28, 2023 Time: 8-9 p.m. ET Location: Virtual Livestream + In-Person Viewing Parties across the US Join us for the 4th Annual Raise a Glass for Rett Gala, presented by Raising a Hand for Rett! GET VIRTUAL TICKETS Grab your commemorative beer or wine glass and join us for an evening of stories from your Rett community, inspiring updates on science and research advancements, and the opportunity to support Rett families all over the world. This special event will be streamed by thousands across the globe, either from one of our viewing parties or from the comfort of your home. Over the past two years, our donors, sponsors, and viewers have raised nearly $1M to empower families and accelerate research towards treatments and cures for Rett. Locations:

• CINCINNATI
• HOUSTON
• MICHIGAN

For sponsorship opportunities or interest in hosting a viewing party in your city, please contact Tim Frank at [email protected].

Date: Monday, May 13, 2024 Time: Registration 11:00 am | Dinner 5 pm Location:Westover Country Club (401 South Schuykill Ave, Jeffersonville, PA 19403) Join us for the 11th annual Mark Charamella Memorial Golf Outing & Dinner! We invite you to take part in the 11th Annual Mark Charamella Memorial Golf Outing & Dinner on May 13, 2024, at Westover Country Club. This tournament will benefit the International Rett Syndrome Foundation in memory of Mark Charamella and in honor of his daughter with Rett syndrome, Deirdre. By participating in this tournament, you can hit the links to create a world without Rett for Deirdre and for many others.  INFORMATION & REGISTRATION

Date: Monday, July 8, 2024 Time: Registration 9 a.m. ET | Shotgun Start 10:30 a.m. ET Location: Thousand Oaks Golf Club (4100 Thousand Oaks Drive NE, Grand Rapids, MI 49525) The Visser Family is excited to host their 2nd annual Goals Fore Gracie Golf Outing inspired by their 5-year-old daughter, Gracie. Join us for a round of golf, lunch, raffle, after tournament cocktails, and more! INFORMATION & REGISTRATION

Date: Saturday, July 13, 2024 Time: 12-4 p.m. Location: IBEW Local 1 (5850 Elizabeth Ave, St Louis, MO 63110) Channel your inner rockstar in POUND® - an exhilarating full body workout inspired by the infectious, energizing, and sweat-dripping fun of playing the drums. Designed for all fitness levels and easily modifiable, POUND® provides the perfect atmosphere for rockstars of all ages and abilities to let loose! Come rock out workout, enjoy refreshments, vendors, a silent auction, and more! Learn More & Register Today!

Date: Saturday, July 20, 2024 Time: 2-5 p.m. ET Location: Henmick Farm & Brewery (4380 N Old State Rd, Delaware, OH 43015) Join us for this FREE, family-friendly event in support of finding a cure for Rett syndrome. We will have raffles, a silent auction, a live auction (with items from our daughters living with Rett), live music, food trucks, a kids' area with crafts, games, and music! INFORMATION & REGISTRATION

Date: Tuesday, September 10th Time: 4-5 pm ET INFORMATION & REGISTRATION Transitioning with Confidence: Enhancing Communication in Academic Settings The International Rett Syndrome Foundation (IRSF) invites you to this live RettEd session focusing on supporting students’ communication needs during school transitions. During this webinar, Emily Cleer Estades, a licensed SLP and mother to a 24-year-old with Rett syndrome, will share her insights from both professional and personal perspectives. She will discuss challenges and successes, offering advice on advocating for students and ensuring successful IEP and transition meetings. Then, Andrea Etkie, also a licensed SLP and Rett syndrome researcher, will present evidence-based strategies and innovative approaches. She will emphasize the importance of including students in transition discussions to ensure their voices are heard and their needs are met. This session aims to combine professional expertise with personal experience to enhance communication support during academic transitions for students of all ages with Rett syndrome, with emphasis on preparing for Adulthood Transition conversations that begin around age 14. Join us for an informative and engaging session! 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.

Date: Saturday, September 21, 2024 Time: 4-7 p.m. CT Location: Olathe Community Center (1205 E Kansas City Rd, Olathe, KS 66061) Raise a glass to a Saturday well-spent! Join us for this FREE, family-friendly event in support of finding treatments and a cure for Rett syndrome. We will have 50/50 raffle, a silent auction, DJ, food truck, Dunk Tank, a kids' area with crafts, games, and face painting! INFORMATION & REGISTRATION

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.

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!  

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. 

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

Date: Saturday, May 17, 2025 Time: 4 p.m. ET Location: The Grove in Newport, ME More information coming soon!