Events

Date: Saturday, October 21st, 2023 Time: 12-4 p.m. PT Location: Whittier High School (12417 Philadelphia St, Whittier, CA 90601) Event Chair: Sherri Brady (Contact Email) The So Cal Strollathon is back this Fall! Save the date to join us on Saturday, October 21st for our 21st annual stroll at Whittier High School. REGISTER & MORE INFORMATION 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 22nd, 2023 Time: 1:00 p.m. - 4 p.m. Central Location: Gussie Field Watterworth Park (2610 Valley View Ln, Farmers Branch, TX 75234) Event Chairs: Vanessa Peace  (Contact Email) REGISTER & MORE INFORMATION 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: 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: Saturday, November 4, 2023 Time: 9:30 a.m. ET Location: West Melbourne’s Space Coast Field of Dreams (3053 Fell Road, West Melbourne,FL 32904) Event Chair: Henry Perez (Contact Email) REGISTER & MORE INFORMATION 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, November 4th, 2023 Time: 10:00 a.m. - 2 p.m. Pacific Location: Vasona Lake County Park (333 Blossom Hill Rd., Los Gatos, CA 95032) Event Chairs:  Rachael Linford, Melissa Nues & Natalie Gifford (Contact Email) REGISTER & MORE INFORMATION 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: Thursday, November 9, 2023 Time: 6:00 p.m. Location: Scotland Run Golf Club (2626 Fries Mill Rd, Williamstown, NJ 08094 Event Chair: Sam Evans (email) & Haley Douglass (email) REGISTER & MORE INFORMATION Join the Fordyce family for their inaugural Cocktails & Murder Mystery Dinner and Show in honor of their daughter, Macie, who has Rett syndrome. Join Macie's Flock - tickets and sponsorships are available now!

Date: Saturday, April 20, 2024 Time: 8 a.m. - 5 p.m. CT Location: River Park Plaza, Ground Floor (10 River Park Plaza Saint Paul, MN 55107)

• The Midwest Rett Syndrome Foundation (MRSF) welcomes families and caregivers for a day of learning and networking. We have real treatments coming to help our children!
• This full day of adult conversation will focus on research updates and local opportunities to get the most out of our Center of Excellence at Gillette Children’s.
• There will be information tables, giveaways and special introductions throughout the day!

Download the informational flyer here. Registration is free but required. Please register by April 6th. INFORMATION & REGISTRATION

Date: Friday, April 26, 2024 Time: Registration 12 p.m. CT | Event Start 1:00 p.m. CT Location: Blackwood Sporting Co. (11400 FM 2854 Rd, Conroe TX 77304) It’s that time again! Let’s break some clays to create a world without Rett! Gather your friends and family for an incredible day of tournament skeet shooting, a crawfish boil, and tons of fun! INFORMATION & REGISTRATION

Date: Saturday, May 4, 2024 Time: 7 a.m. Registration | 8:30 a.m. 5K | 9 a.m. 1-Mile Fun Run Location: Busse Woods - Grove 26, Elk Grove, IL The race will start and finish at Grove #26. Enter Busse Woods off of Arlington Heights Road, south of Higgins Road in Elk Grove Village. From the serious runner to the recreational runner to family members and friends of all ages, the 25th annual Run For Rett is an event you don’t want to miss. Make a difference in the life of those affected by Rett syndrome and join us for the Run For Rett 5K Run/Walk & 1 Mile Fun Run. *First 200 participants receive an official Run For Rett t-shirt* INFORMATION & REGISTRATION

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: Friday, June 28th, 2024 Location: Dunegrass Golf Club (65 Wild Dunes Way, Old Orchard Beach, ME 04064) Time: 7 a.m. Registration | 8 a.m. Scramble The Rip it for Rett hockey-themed golf tournament is a blast (if we do say so ourselves), a great round of golf on a great course with really awesome people. What more can you ask for? Find out the details on how to get in on the fun! 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: Saturday, September 7, 2024 Time: 10:00 a.m. ET Location: Buffalo Creek Nature Park (154 Monroe Road, Sarver, PA 16055) Event Chairs: Terre & Kati Gray (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: 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: Sunday, October 6, 2024 Time: 10:00 a.m. ET Location: East Goshen Park (1661 Paoli Pike West Chester, PA 19380) Event Chair: Siobhann Bennett (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.