Events

Oct
16
Sat
2nd Annual South Carolina Strollathon
Oct 16 @ 10:00 am
Join us for the 2nd Annual South Carolina Strollathon! We hope to safely gather in-person this Fall and will keep you updated as the event becomes closer! Fundraising pages now open to create teams & personal pages for the Strollathon. Event Chairs: Stephanie Winckler, Danyell Flowers Follow us on Facebook for more event info & updates. Information & Registration
Oct
19
Tue
Bingo for Rett
Oct 19 @ 6:30 pm

Bingo for Rett

Date: Tuesday, October 19th at 6:30pm Location: Sparks American Legion Hall, 730 4th St, Sparks, NV 89431 Get your bingo cards and markers ready as we play Bingo for Rett this October! Enjoy a fun-filled evening with bingo, dinner, non-alcoholic drinks and dessert. Your ticket also includes two bingo cards to be used for 5 rounds. Information & Registration
Oct
23
Sat
Rett Gets Rocked
Oct 23 – Oct 24 all-day
Be sure to support Jay Murry, avid Rett Racer & supporter as he takes on his 4th Annual Rett Gets Rocked initiative. Over the past three years, nearly $14,000 have been raised—split between IRSF and the Rett Spectrum Clinic at St. Louis Children’s Hospital. Rett Gets Rocked combines Jay’s love for running ultramarathons with the intent to help find a cure for Rett syndrome. In 2021, Jay will run 100 miles and has one other big goal--to help bring a cure of Rett syndrome to those who battle it every day. To support Jay in his efforts, go cheer him on at Wash-U on Sat 10/23 and 10/24. More details can be found at: https://rettracers2021.funraise.org/fundraiser/jay-murry
19th Annual SoCal Strollathon: Virtual Edition
Oct 23 @ 8:00 am
Join us for the 19th Annual SoCal Strollathon! Join us virtually this Fall as you Stroll in your neighborhood or host a picnic to help overpower Rett. We will host a live event via Zoom on Saturday, October 23rd, 2021 at 12 noon PST. Please check back soon for more details.
  • Fundraising pages now open to create teams & personal pages for the virtual Strollathon.
  • Event Chairs: Sherri Brady
  • Follow us on Facebook for more event info & updates.
Register Donate Sponsor
14th Annual St. Louis Strollathon
Oct 23 @ 10:00 am
Join us for the 14th Annual St. Louis Strollathon Fall 2021! We miss you and can't wait to be together again. We hope to have a live, in-person Stroll on Saturday, October 23rd, 2021- more details to come! Until then, stay safe & be well. Fundraising pages now open to create teams & personal pages for the Strollathon. Event Chairs: Joyce Opinsky, Amy Kreher & Amanda Sommer ([email protected]) Follow us on Facebook for continued updates. Information & Registration
Nov
6
Sat
2nd Annual Raise a Glass for Rett Virtual Gala
Nov 6 @ 8:00 pm

2nd Annual Raise a Glass for Rett Virtual Gala

Date: November 6, 2021 Time: 8:00pm Be inspired by stories from our community, hear from Executive Director Melissa Kennedy and Chief Science Officer Dominique Pichard, learn about the incredible work that the International Rett Syndrome Foundation is doing to accelerate research and empower families, and much more. Before the evening is over, we hope to surpass our goal of $200,000, getting us closer to a world without Rett. You can check our progress here, as fundraising is already underway! Information & Registration
Dec
8
Wed
Retted: Occupational Therapy Strategies: Maximizing Hand Function + Feeding
Dec 8 @ 1:00 pm

Occupational Therapy Strategies: Maximizing Hand Function + Feeding

People with Rett often have difficulty controlling hand movements, which can lead to frustration in using communication devices and participating in adapted recreation and many daily activities. Feeding in Rett patients can also be challenging because of decreased motor skills when chewing and swallowing as well as communication issues in relaying what they want. If you're facing either of these issues, finding a trained therapist who understands Rett is key to creating reasonable goals, managing expectations, and perhaps recovering gains lost during a regressive phase of Rett. Todd Levy and Emily Scott from Children's Hospital of Philadelphia and IRSF Center of Excellence will discuss strategies they've seen work in Rett patients and outline the criteria to look for in finding an occupational therapist that will meet your loved one's needs. Information & Registration
Feb
27
Sun
Shop for Good: IRSF & Kendra Scott @ Kendra Scott
Feb 27 @ 12:00 pm

Shop for Good: IRSF & Kendra Scott in Liberty Township OH

Date: Sunday, Feb 27th, 2022 Time: 12-3pm Location: Kendra Scott, 7560 Gibson Street, Liberty Township OH 45069 Come shop with IRSF at Kendra Scott for a chance to restock your jewelry box (or gifts for others) while supporting the International Rett Syndrome Foundation. A portion of each sale will go back to IRSF to help accelerate research towards treatments and ultimately a cure for Rett. If you aren’t local, you can still shop online. This is a great opportunity to help support IRSF during Rare Disease Day! Please direct any questions to Jackie Ventura at [email protected].
Mar
11
Fri
Rett Syndrome Externally-Led Patient Focused Drug Development Meeting
Mar 11 @ 10:00 am – 3:00 pm
Rett Syndrome Externally-Led Patient Focused Drug Development Meeting Date: Friday, March 11th, 2022 Time: 10am-3pm EDT Location: Online via video conference (meeting registrants will receive an email with a link to the meeting) The Rett Syndrome Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting is our community’s one shot to provide the Food and Drug Administration (FDA) with insights to influence the development of new drugs to treat Rett. The International Rett Syndrome Foundation is co-hosting this event with the Rett Syndrome Research Trust. These organizations invite and encourage you to attend. Come and share about the impact of Rett syndrome on your family and how symptom improvements would affect you and your loved one’s quality of life. Together, we can make a difference for the future of Rett syndrome healthcare. Information & Registration
Apr
9
Sat
2022 Golf Fore a Cure
Apr 9 @ 7:00 am

Golf Fore a Cure

When | Saturday, April 9, 2022 7:00 AM Registration 8:00 AM Shotgun Start Where | Cleveland Heights Golf Course Contact Karli Hughes (863) 899-0784 or [email protected] Join us for the 5th Annual Golf Fore a Cure benefiting the International Rett Syndrome Foundation. Sponsor opportunities available! Information and Registration
Apr
26
Tue
2022 IRSF Rett Syndrome Scientific Meeting @ GAYLORD OPRYLAND RESORT & CONVENTION CENTER
Apr 26 – Apr 27 all-day
One of the goals of our Rett Syndrome Scientific Meeting is to bring together researchers studying Rett and related fields in academia, industry, and governmental agencies from around the world. We invite all researchers to participate, discuss the latest in Rett syndrome science, and share their findings in this meeting. IRSF’s Rett Syndrome Scientific Meeting will be held immediately before the main portion of the ASCEND 2022 Rett Syndrome National Family Summit in Nashville, Tennessee. It will consist of both poster and oral presentation sessions focused on basic, translational, and clinical work on Rett syndrome. LEARN MORE & REGISTER
Apr
27
Wed
ASCEND 2022 Rett Syndrome National Summit @ GAYLORD OPRYLAND RESORT & CONVENTION CENTER
Apr 27 – Apr 30 all-day
We’re gearing up for the ASCEND 2022 Rett Syndrome National Summit in Nashville! GAYLORD OPRYLAND RESORT & CONVENTION CENTER April 27-30, 2022 Designed to unite us as a community, this event will bring together parents, families, clinicians, researchers, and Rett organizations around the world. Together we can overcome the challenges of Rett syndrome and reach the summit of hope and healing–a world without Rett syndrome. Information & Registration
Apr
29
Fri
2022 The Great Rett Shootout
Apr 29 @ 12:00 pm

APRIL 29, 2022

Blackwood Sporting Co., 11400 FM2854 Conroe, TX

It’s that time again! Let’s break some clays and go ALL IN to create a world without Rett! Gather your friends and family for an incredible day of tournament skeet shooting, live music, raffles, crawfish boil, and tons of fun to support this very special cause.

Title Sponsor: Johnson Supply/Armstrong Air

EVENT INFO

    • Friday, April 29th, 2022
    • 12:00pm registration / 1:00 tournament
    • Blackwood Sporting Co., 11400 FM2854 Rd, Conroe, TX 77304
    • Crawfish boil, beverages, live music, raffle, and awards ceremony following the shootout
    • Individual awards for 1st, 2nd, and 3rd place, and 1st Overall Team
    • Experienced and Novice shooters are welcome!
      • $900 per 4-man team
      • $250 per individual
      • Mulligan Package: 6 Shots for $30
      • Carts included, ammunition not included
Information & Registration
May
21
Sat
Cammy Can’s Cinderella Story – 10th (almost) Annual
May 21 @ 5:00 pm
Cammy's Golden birthday What: Cammy Can's Cinderella Story - 10th (almost) Annual When: May 21, 2022 5pm til 10pm Where: The Farehouse Market, 600 W Chicago Ave, Chicago, IL Why: To Fund a cure for Rett Syndrome! Information & Registration Make a Donation Follow CAMMY CAN on Facebook
Aug
20
Sat
Fill Your Freezer for Rett @ Online
Aug 20 all-day
The Morrison Family is hosting a pig raffle in honor of their daughter, Savannah who has Rett syndrome. They are excited to host this unique fundraiser as a way to help overpower Rett. Tickets are now available for purchase and the drawing will be hosted on Saturday, August 20th. Two prizes available and one person can win both prizes. Tickets are 1 for $10 or 6 for $50. Each prize is for half of a processed pig. If you don’t want to purchase a ticket but still want to support the Morrison Family, you may make a donation below. *Must be located within 180 miles of Dragoon, AZ for local delivery. Outside of that range, winner(s) must be willing to pick up. Should winner choose to donate back the meat, an additional winner(s) will be drawn. MORE INFORMATION Please direct any questions to Sarah & Lonnie Morrison: Sarah: 206-947-0176 Lonnie: 520-507-1593
Sep
24
Sat
Michigan Strollathon @ Drake Sports Park
Sep 24 @ 10:00 am – 1:00 pm
Date: Saturday, September 24th, 2022 Time: 10:00 a.m. - 1 p.m. ET Location: Drake Sports Park (6801 Drake Rd, West Bloomfield Township, MI 48322) Event Chairs: Lisa Fenberg & Kate Ficano (Contact Email) The Michigan Strollathon is back and in-person this Fall! Save the date to join us on Saturday, September 24th for our 13th annual stroll at Drake Sports Park in West Bloomfield Township, MI. 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.
Nebraska Strollathon @ Yanney Heritage Park (ERC Building)
Sep 24 @ 11:00 am – 2:00 pm
Date: Saturday, September 24th, 2022 Time: 10:00 a.m. - 1 p.m. CT Location: Yanney Heritage Park - ERC Building (2020 W 11th St, Kearney, NE 68845) Event Chairs: Jacy Horst, Megan Ladenburger, & Elly Gullion (Contact Email) The Nebraska Strollathon is back and in-person this Fall! Save the date to join us on Saturday, September 24th for our 11th annual stroll at Yanney Heritage Park in Kearney, NE. 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
2
Sun
Minnesota Strollathon @ Environmental Learning Center
Oct 2 @ 2:00 pm – 5:00 pm
Date: Sunday, October 2nd, 2022 Time: 1-4 p.m. CT Location: Environmental Learning Center (13550 Dakota Ave S, Savage, MN 55378) Event Chairs: Mary Kallstrom (Contact Email) The Minnesota Strollathon is back and in-person this Fall! Save the date to WALK N' ROLL with us on Sunday, October 2nd for our 16th annual stroll at the Environmental Learning Center in Savage, MN. 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
8
Sat
Throw for a Cure Cornhole Tournament @ Riverwinds Community Center
Oct 8 @ 9:30 am
Date: Saturday, October 8th, 2022 Time: 9:30 am ET Location: Riverwinds Community Center (1000 Riverwinds Drive, West Deptford NJ 08086) Contact: Mandy Fordyce at [email protected] or 856-430-2047 Join the Fordyce Family & friends for the 2nd Annual Throw for a Cure Cornhole Tournament benefitting the International Rett Syndrome Foundation. Teams will throw for a cure in honor of Macie Fordyce. Hosted at the Riverwinds Community Center, participants will enjoy a cornhole competition, food trucks, vendors & a raffle. MORE INFORMATION
Cincinnati Strollathon @ Cincinnati Zoo & Botanical Garden
Oct 8 @ 10:00 am – 2:00 pm
Date: Saturday, October 8th, 2022 Time: 10:00 a.m. ET Location: Cincinnati Zoo & Botanical Garden (3400 Vine St, Cincinnati, OH 45220) Event Chairs: Brittney Gibson and Jen & Jim Magato (Contact Email) The Cincinnati Strollathon is back and in-person this Fall! Save the date to join us on Saturday, October 8th for our 18th annual stroll at the Cincinnati Zoo & Botanical Garden. 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.
St. Louis Strollathon @ JCC St. Louis
Oct 8 @ 11:00 am – 2:00 pm
Date: Saturday, October 8th, 2022 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) The St. Louis Strollathon is back and in-person this Fall! Save the date to join us on Saturday, October 8th for our 15th annual stroll at the JCC St. Louis, also benefitting the St. Louis Rett Syndrome Clinic. 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
21
Fri
Rett Spectrum 5th Annual Family Education Symposium @ Washington University School of Medicine
Oct 21 @ 3:00 pm
Date: Friday, October 21, 2022 Time: 3:00 p.m. CT (entry in-person/zoom at 2:45p) Location: Washington University School of Medicine (660 S Euclid Ave, St. Louis, MO 63110) INFORMATION & REGISTRATION
Oct
22
Sat
IRSF RettEd Day at Kennedy Krieger Institute @ Kennedy Krieger Institute
Oct 22 @ 8:00 am – 4:00 pm
Date: October 22, 2022 Time: 8:00 a.m. - 4 p.m. Eastern Time Location: Kennedy Krieger Institute's Arnold J. Capute, MD, MPH Conference Center – Eighth Floor (1741 Ashland Avenue, Baltimore, MD 21205) 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. REGISTRATION & INFORMATION Make sure to follow the event on Facebook to stay up to date!
So Cal Strollathon @ Whittier High School
Oct 22 @ 3:00 pm – 7:00 pm
Date: Saturday, October 22nd, 2022 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 and in-person this Fall! Save the date to join us on Saturday, October 22nd for our 20th 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
29
Sat
3rd Annual Rally for Rett @ South Carolina State House
Oct 29 @ 11:00 am
Date: Saturday, October 29, 2022 Time: 11:00 a.m. ET Location: SC State House (1100 Gervais St, Columbia, SC 29208) INFORMATION & REGISTRATION
Oct
30
Sun
Dallas Strollathon @ Gussie Field Watterworth Park
Oct 30 @ 2:00 pm – 5:00 pm
Date: Sunday, October 30th, 2022 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.
Nov
5
Sat
Florida Strollathon @ Tradewinds Park
Nov 5 @ 9:30 am
Date: Saturday, November 5, 2022 Time: 9:30 a.m. ET Location: Tradewinds Park, Grandiosa Shelter (3600 W. Sample Rd, Coconut Creek, FL 33073) 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.
Nov
12
Sat
3rd Annual Raise a Glass for Rett Gala @ Watch Virtually or at locations throughout the US
Nov 12 @ 8:00 pm – 9:00 pm
Date: Saturday, November 12th, 2022 Time: 8-9 p.m. ET Location: Virtual Livestream + In-Person Viewing Parties across the US Join us for the 3rd Annual Raise a Glass for Rett Gala, presented by Raising a Hand for Rett and Kathryn & Luke Kissam! 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 broadcast live from New York City and reach thousands across the globe. Over the past two years, our donors, sponsors, and viewers have raised more than $400,000 to empower families and accelerate research towards a cure. Go ALL IN! Get your ticket to watch from your living room or learn more about a viewing party near you! Got your tickets? Make sure to let us know you're coming on our Facebook Event Page to get up-to-date information and connect with other attendees! Download the event's ONLINE JOURNAL for more information on the program, special messages, and all the nominations submitted by the community for our superheroes for Rett! For sponsorship opportunities or interest in hosting a viewing party in your city, please contact Jackie Ventura at [email protected].
Dec
10
Sat
Hannah’s 11th Annual Art Show for IRSF
Dec 10 @ 2:00 pm

Hannah’s 11th Annual Art Show for IRSF

Date: Saturday, December 10th Time: 2pm-4pm ET Location: Four Corners Art Gallery 148 N Main St, Mooresville, NC 28115 Join Hannah Carpenter for her annual art show for IRSF. Hannah works tirelessly all year long with her art instructor to create beautiful pieces of art. They are transformed into calendars, notecards and print all for sale at her holiday show. Proceeds benefit IRSF. Please direct any questions to Trisha Carpenter (Hannah’s mom) at [email protected].
Jan
28
Sat
Siera’s 35th Birthday Bash for IRSF
Jan 28 @ 5:00 pm

Siera’s 35th Birthday Bash for IRSF

Date: Saturday, January 28th, 2023 Time: 5pm-11pm Location: St. Louis Moose Lodge 1566, 811 Michigan Ave, St Louis MI 48880 Come help us celebrate Siera’s 35th birthday while raising funds for IRSF. Enjoy an evening of entertainment, dinner & cash bar, live & silent auction and more! All ages welcome. To RSVP, please contact Lisa Rushin at: 989-285-5994. Unable to join but want to donate- you may do so here: https://rettgrassrootevents.funraise.org/fundraiser/lisa-rushin All proceeds to benefit IRSF.