Events

Oct
6
Fri
WUSM/SLCH Annual Family Education Symposium @ Washington University School of Medicine
Oct 6 @ 3:00 pm – 6:00 pm
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
Oct
7
Sat
New Jersey Strollathon @ Thompson Park, Old Orchard Picnic Pavilion
Oct 7 @ 9:00 am – 12:00 pm
Date: Sunday, October 7th, 2023 Time: 9:00 a.m. - 12 p.m. Eastern Location: Thompson Park, Old Orchard Picnic Pavilion (805 Newman Springs Road, Lincroft, NJ 07738-1695) Event Chairs: Leslie Greenfield & Allison Fitzgerald (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.
Maryland Strollathon @ Matthew Henson State Park
Oct 7 @ 10:00 am – 2:00 pm
Date: Saturday, October 7th, 2023 Time: 10:00 a.m.-1 p.m. ET Location: Matthew Henson State Park (13421 Georgia Ave, Silver Spring, MD 20906); park at the Matthew Henson Trail Park & Parking Area located behind the Global Mission Church Event Chairs: Toni Moore (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.
St. Louis Strollathon @ JCC St. Louis
Oct 7 @ 11:00 am – 2:00 pm
Date: Saturday, October 7th, 2023 Time: 10:00 a.m. CT Location: JCC St. Louis (2 Millstone Campus Drive, St. Louis, MO 63146) Event Chairs: Joyce Opinsky, Amy Kreher, & Amanda Sommer (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.
Oct
16
Mon
On the Ridge for Rett Golf Scramble @ Falcon Ridge Golf Course
Oct 16 @ 11:00 am
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!
Oct
21
Sat
So Cal Strollathon @ Whittier High School
Oct 21 @ 3:00 pm – 7:00 pm
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.
Oct
22
Sun
Dallas Strollathon @ Gussie Field Watterworth Park
Oct 22 @ 2:00 pm – 5:00 pm
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.
Oct
28
Sat
4th Annual Raise a Glass for Rett Gala @ Watch Virtually or at locations throughout the US
Oct 28 @ 8:00 pm – 9:00 pm
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: For sponsorship opportunities or interest in hosting a viewing party in your city, please contact Tim Frank at [email protected].
Nov
4
Sat
Florida Strollathon @ West Melbourne’s Space Coast Field of Dreams
Nov 4 @ 9:30 am
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.
Nor Cal Strollathon & 5K @ Vasona Lake County Park
Nov 4 @ 11:00 am – 3:00 pm
  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.
Nov
9
Thu
Cocktails and Murder Mystery Dinner and Show @ Scotland Run Golf Club
Nov 9 @ 6:00 pm
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!
Nov
28
Tue
Giving Tuesday 2023 @ Worldwide
Nov 28 all-day
This year’s Giving Tuesday is set for November 28th and IRSF needs your help. We are asking our community of supporters, families, and friends to help us accelerate research and empower families, no matter where they are on their Rett syndrome journey. Will you help us raise $100,000 this Giving Tuesday to give hope to every family living with Rett syndrome? Thanks to a generous donor who believes in our mission, we have a $50,000 matching gift to help! Go ALL IN for someone you love with Rett syndrome. Create your personal fundraising page and request your custom social media graphic now and get ready to double your donation on November 28th. MORE INFORMATION
Nov
29
Wed
Beer for Humans Pint Night @ Rhinegeist Brewery
Nov 29 @ 5:00 pm – 8:00 pm
Date: Wednesday, November 29, 2023 Time: 5:00 – 8 p.m. ET Location: Rhinegeist Brewery (1910 Elm St, Cincinnati, OH 45202) Sip for a cause! Each month, Rhinegeist highlights four local non-profit organizations that are brewing positive change in our community. Grab a pint Wednesdays from 5-8 pm, receive a token with each pint purchase, explore each organization, and vote for your non-profit of choice by placing your token in their designated dropbox! You may also make a monetary donation in any dropbox. At the end of the month, each organization receives a donation based upon the amount of “votes” they receive, while the organization with the most votes receives a bonus. So grab your pals, grab a pint, and support our local non-profits! MORE INFORMATION
Jan
22
Mon
Parents of Newly Diagnosed Zoom Meet-Up @ Virtual Meeting
Jan 22 @ 8:00 pm – 9:30 pm
Parents of newly diagnosed children with Rett syndrome need a safe space to share their experiences and discuss resources, equipment, toys, tips, and more.
Moderated by IRSF staff and supported by volunteer parents, this Facebook Group is for parents of children who were diagnosed with Rett syndrome between 2022 and today. Join us for our first Zoom Meet-Up session to meet other parents in the same life stage, make friendships and connections, and find helpful resources and support during this challenging time.
To get the link to join, please visit the Facebook Group or request to join by answering the membership questions.
Mar
13
Wed
ASHA Rare Diseases and Disorders: SLP Assessment and Intervention @ Online Conference
Mar 13 – Mar 25 all-day
In March, Theresa Bartolotta, PhD, CCC-SLP, will present at an online conference from the American Speech-Language-Hearing Association (ASHA) on Rare Diseases and Disorders: SLP Assessment and Intervention. Pass this information on to your child's SLP or care provider who can earn CE credits for attending! The Rett Syndrome Communication Guidelines: A Resource for Best Practices in SLP Assessment and Evaluation Theresa Bartolotta, PhD, CCC-SLP This session will discuss how the features of Rett syndrome impact communication as well share strategies to assist individuals with Rett syndrome and their families in advancing communication to improve quality of life. The session will focus on The Rett Syndrome Communication Guidelines—the first evidence-based resource for assessment and evaluation of communication skills in individuals with Rett syndrome. After completing this session, you will be able to:
  • summarize the contents of the Rett Syndrome Communication Guidelines
  • identify resources for best practices in communication assessment and intervention for individuals with Rett syndrome
  • use the Rett Syndrome Communication Guidelines to assist team members in understanding how the features of Rett syndrome impact communication
Content disclosure: This session focuses on a particular assessment and intervention guide. MORE INFORMATION
Apr
20
Sat
MRSF Rett Syndrome Education Day 2024 @ River Park Plaza
Apr 20 @ 9:00 am – 6:00 pm
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
Apr
26
Fri
The Great Rett Shootout @ Blackwood Sporting Co.
Apr 26 @ 2:00 pm
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
May
4
Sat
Run for Rett @ Busse Woods Grove - North, Grove #26
May 4 @ 8:00 am
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
May
13
Mon
Mark Charamella Memorial Golf Outing & Dinner @ Westover Country Club
May 13 @ 11:00 am
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
Jun
18
Tue
2024 IRSF Rett Syndrome Scientific Meeting @ The Westin Westminster
Jun 18 – Jun 19 all-day
Date: June 18-19, 2024 Time: All Day Location: Westminster, Colorado LEARN MORE The research community is invited to join us in Colorado for the 2024 IRSF Rett Syndrome Scientific Meeting next June! Part of ASCEND 2024, the IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2-day meeting, attendees representing academia, industry, and governmental agencies will share their latest research advances and discuss ways to leverage learning in the lab to be rapidly deployed in the clinic. The IRSF Rett Syndrome Scientific Meeting is the only annual, global, and comprehensive research meeting focused exclusively on Rett syndrome. Thank you to our sponsors: Presenting Sponsor: Platinum Sponsors:
Bronze Sponsor:
DepYmed
Jun
19
Wed
ASCEND 2024 Rett Syndrome National Summit (Family Conference) @ The Westin Westminster
Jun 19 – Jun 22 all-day
Designed to unite us as a community, this event will bring together parents, families, clinicians, researchers, and Rett organizations around the world. Come join us in the Mile High City as we ascend to greater heights at The Westin Westminster. This location offers sweeping views of the Rocky Mountains and is conveniently situated just 15 minutes from both Denver and Boulder. Featuring a lineup of expert speakers, updates on Rett syndrome research, and opportunities to connect with your Rett community, ASCEND 2024 is not to be missed. Together we can overcome the challenges of Rett syndrome and reach the summit of hope and healing–a world without Rett syndrome. REGISTER & MORE INFORMATION

Thank you to our sponsors:

Presenting Sponsor: Platinum Sponsors:
Bronze Sponsor (Family Conference):
Anovo
Jun
28
Fri
Rip it for Rett Golf Tournament @ Dunegrass Golf Club
Jun 28 @ 8:00 am
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
Jul
8
Mon
Goals Fore Gracie @ Thousand Oaks Golf Club
Jul 8 @ 10:30 am
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
Jul
13
Sat
POUND Out Rett @ IBEW Local 1
Jul 13 @ 1:00 pm – 5:00 pm
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!
Jul
20
Sat
Let’s Flamingle for a Cure @ Henmick Farm & Brewery
Jul 20 @ 2:00 pm – 5:00 pm
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
Sep
7
Sat
Pittsburgh Strollathon @ Buffalo Creek Nature Park
Sep 7 @ 10:00 am
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.
Sep
21
Sat
Raise a Glass for Rett – Kansas @ Olathe Community Center
Sep 21 all-day
Date: Saturday, September 21, 2024 Time: TBD Location: Olathe Community Center (1205 E Kansas City Rd, Olathe, KS 66061) More information coming soon!
Michigan Strollathon @ Marshbank Park
Sep 21 @ 10:00 am – 1:00 pm
  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.
Sep
28
Sat
Nebraska Strollathon @ Yanney Park
Sep 28 @ 12:00 pm
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.
Oct
2
Wed
9th World Rett Syndrome Congress
Oct 2 – Oct 5 all-day
RETT Syndrome Association of Australia is excited to announce the 9th World RETT Syndrome Congress. This will be held on the Gold Coast in Queensland, Australia on Wednesday the 2nd of October until Saturday the 5th of October 2024. MORE INFORMATION