Events

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: 10:00 a.m. - 1 p.m. ET Location: Marshbank Park (2805 Hiller Road, West Bloomfield, MI 48324) Event Chairs: Lisa Fenberg & Kate Ficano (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.

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: Saturday, September 28, 2024 Time: 10:00 a.m. ET Location: Crowder County Park (4709 Ten-Ten Road, Apex, NC 27539) Event Chair: Gwen Noecker (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.

Date: Saturday, September 28, 2024 Time: 11 a.m. CT Location: Yanney Park (2020 W 11th St, Kearney, NE 68845) Event Chairs: Elly Gullion 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.

Date: Sunday, September 29, 2024 Time: 11am-2:30pm Location: Pine Hill Lakes Park Event Chairs: Jim & Jennifer Magato and Joe & Lindsey Benjamin MORE INFORMATION & TICKETS 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 $17M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

You're invited to the first annual Swing Fore Skylar golf outing! Enjoy a day of golf for a good cause. Breakfast and lunch will be provided and we invite you to take part in the putt-to-win game, longest drive competition, ticketed beer cart and more. Your support makes a difference for Skylar and those living with Rett syndrome. Please wear a shade of purple to show your support. Please note that registration begins at 8:15am with the shotgun start at 9:00am. See you there! REGISTER TODAY! Follow the event on Facebook.

Date: Saturday, October 5, 2024 Time: 10 a.m. - 2 p.m. ET Location: Thompson Park (805 Newman Springs Rd, Lincroft, NJ 07738) Event Chairs: Leslie Greenfield & Allison Fitzgerald LEARN MORE & REGISTER The Strollathon is a nationwide IRSF fundraiser that brings together local communities to raise critical funds towards treatment and a cure for Rett syndrome. For more than 20 years, these family-friendly events powered by dedicated volunteers, sponsors, donors, and Rett families have raised more than $17M to advance IRSF’s mission to empower families and accelerate research toward a world without Rett.

Date: Saturday, October 5th, 2024 Time: 12:00 p.m.-4 p.m. ET Location: Matthew Henson State Park (13421 Georgia Ave, Silver Spring, MD 20906) Event Chairs: Toni Moore & James Borris, Daniel Jackson, and Cathy Borris-Hale LEARN MORE & REGISTER 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.

Date: Monday, October 14, 2024 Time: 10am CT Location: Falcon Ridge Golf Course - 20200 Prairie Star Parkway, Lenexa, KS 66220 Event Chairs: Sam (email) and Katie (email) Evans Join us for a rare opportunity at a stress-free Monday on the golf course to support a great cause! We'll cover breakfast, lunch, beverages, and snacks. All you need to do is show up for a day of golf, contests, raffles, and prizes! Online Auction Coming Soon!

Join us for the 1st annual Idaho Strollathon! The IRSF Strollathon is a family-friendly event that brings together local communities to raise critical funds towards treatments and a cure for Rett syndrome. Over the last 20 years, Strollathons held all across the U.S. have raised nearly $17M to advance IRSF's mission to empower families and accelerate research toward a world without Rett syndrome. We are looking forward to joining the fight here in Idaho.

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.

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: 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.

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.

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.

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

Join us for a night of dinner, drinks and dancing all while benefitting The Ella Foard Foundation and Rett syndrome! By attending Ella’s Evening of Hope, you will be helping to create a world without Rett for many others.

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!