Events

Oct
3
Sat
Rett Gets Rocked Ultramarathon
Oct 3 @ 12:00 pm – Oct 4 @ 8:00 pm

Rett Gets Rocked Ultramarathon

A weekend in which participants complete an ultra marathon of their choosing--from 50K to 100 miles, or from 6 to 48 hours. They can stretch their event over the month of October if desired. Proceeds from the event go to Rettsyndrome.org and the Rett Spectrum Clinic at St. Louis Children's Hospital! Register for RGRVUW by purchasing a race shirt! REGISTER Jay Murry will be doing his ultra-marathon in his local sub-division, the Vineyards. The Rett Gets Rocked headquarters will be located at: 756 Napa Lane, St. Charles MO 63304 on Sat 10/3 from 12pm- Sun 10/4 at 8pm. To donate to Jay, please click here. To follow along on Facebook, visit: https://www.facebook.com/24hourjaymurry/ For more information, contact Jay at [email protected]
May
8
Sat
Run for Rett
May 8 – May 16 all-day

Run for Rett

WE ARE GOING VIRTUAL AGAIN!!!

When: Saturday, May 8th - Sunday, May 16th Where: Any time and any place Our responsibility is to the health and well being of our participants and volunteers for the Run For Rett. The decision to change to a virtual event was thoughtfully made with extreme concern for our entire Rett syndrome community and our dedicated participants and volunteers. Thank you for your understanding, cooperation and support. How you participate is totally up to you. You can run the 5K, walk a mile or sit in your recliner. No matter what you choose you are a winner because you are making a difference in the lives of those impacted by Rett syndrome. We encourage you to register online. It’s easy to register at Raceroster.com/46429 Follow us on Facebook: Click here - Run Rett 2021
Jun
5
Sat
RETT RACERS VIRTUAL SUMMER 5K
Jun 5 @ 10:00 am

The 2nd Annual Summer Virtual 5K is Back!

Date: June 5, 2021 Join our community around the world by lacing up your shoes and hitting your local neighborhood, trail (social distancing required), or treadmill. Run, walk, skip, or stroll to end Rett syndrome! No registration fee; however, fundraising is encouraged. Once $200 has been raised, we will send you a Rett Racer t-shirt. Share your photos on race day to our Facebook event or your personal fundraising page! Use the hashtag #rettracers. Information & Registration
Oct
9
Sat
Run for Rett 5K
Oct 9 @ 7:00 am

2nd Annual Run for Rett 5k

Date: Saturday, October 9th, 2021 Location: Bradenton, FL We are very excited to have the Second Annual Run for Rett 5K to help spread awareness about Rett Syndrome. This year plans to be quite exciting with donations going to International Rett Syndrome Foundation as well the We Carry Kevan crew here to help any families who would like to join in the area with a child afflicted with Rett Syndrome. There will be food, prizes, and much more! Registration Make a Donation You can also check out our Facebook event for more information: https://www.facebook.com/events/261650685291726 Please direct any questions to event chair, Artie Phillips at [email protected]
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
Apr
23
Sat
Run for Rett 2022
Apr 23 @ 8:30 am

RUN FOR RETT

Saturday, April 23, 2022

IN PERSON EVENT!!! & VIRTUAL EVENT!!! Location: Busse Woods, Grove #28 Elk Grove, IL Schedule: 5K – 8:30 am (on-site registration begins at 7:30) 1 mile fun run – 9:00 am HOW TO RUN VIRTUALLY Register at raceroster.com Run anytime between April 16 and April 23, 2022. Choose your own course Most importantly….have fun and enjoy the time outside! To register for either event visit raceroster.com First 200 participants will receive an official Run for Rett T-Shirt! Contact Person: Diane Ross, Email: [email protected], Tel: 847-524-7540
Jun
4
Sat
IRSF’s 3rd Annual Virtual Summer 5K
Jun 4 all-day
IRSF's 3rd Annual Virtual Summer 5K

The Virtual Summer 5K is back this June!

Join our community around the world right from your local neighborhood, trail, or treadmill. Whether you run, walk, or stroll, you'll be going ALL IN for a cure!

Why Lace Up for Rett?

  1. It raises money for Rett syndrome research. Once you raise $200, we'll send you a Rett Racer t-shirt.
  2. It unites us as a community. Share your photos on race day to our Facebook Event Page or your personal fundraising page. Use the hashtag #rettracers.
  3. It's FUN! Whether you're a seasoned runner or on a stroll with your family, everyone can join in on the fun - anywhere and at any time!

THE DETAILS Saturday, June 4th, 2022 Anywhere you are! No registration fee; however, fundraising is encouraged

Contact Jackie Ventura at [email protected] with questions.

SIGN-UP OR LEARN MORE
Oct
15
Sat
Bee The Light 5K @ Southeastway Park
Oct 15 @ 9:00 am
Date: Saturday, October 15th, 2022 Time: 9am-12pm ET Address: Southeastway Park, 5624 S. Carroll Rd, New Palestine, IN 46163 Register and Learn More Event Info: A great opportunity to run or walk in the cool fall weather, the Bee the Light 5K is the first annual race sponsored by The Shelby Foundation for Kindness Delivered. This exciting event on a paved trail will highlight the family-friendly environment of Southeastway Park which also includes bike trails, a playground, shelters, an education center, wooded areas, and a pond. This race is held in honor of Shelby Kraft, who passed away in early 2022, and 100% of registration proceeds will be donated to the International Rett Syndrome Foundation. Rett Syndrome is a neurologic disorder, primarily affecting girls and women, which can lead to significant disability. Shelby is also the namesake of Kindness Delivered, an organization that delivers kindness in Jesus' name throughout the community. For more information on Shelby and Kindness Delivered, visit kindnessdelivered.org.
Apr
22
Sat
Run for Rett 2023 @ Busse Woods - North, Grove #28
Apr 22 @ 7:00 am
Date: Saturday, April 22, 2023 Time: 7 a.m. Registration | 8:30 a.m. 5K | 9 a.m. 1-Mile Fun Run Location: Due to circumstances beyond our control, we are moving the Run For Rett to Busse Woods North, Grove #28. It is the same location used in prior years.  Enter Busse Woods 1 block east of Route 53 on Golf Rd.  All other details remain the same. From the serious runner to the recreational runner to family members and friends of all ages, the 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
Apr
28
Fri
The Great Rett Shootout 2023 @ Blackwood Sporting Co.
Apr 28 @ 2:00 pm
Date: Friday, April 28, 2023 Time: 12 p.m. Registration | 1:00 p.m. Event Start Location: Blackwood Sporting Co. (11400 FM 2854 Rd, Conroe TX 77304) 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. INFORMATION & REGISTRATION
Apr
29
Sat
Cammy Can’s 11th Annual Cinderella Story @ The Farehouse Market
Apr 29 @ 6:00 pm – 11:00 pm
Date: Saturday, April 29, 2023 Time: 5-10 p.m. CT Location: The Farehouse Market (600 W Chicago Ave, Chicago, IL 60654) We're excited to be back at The Farehouse Market for a night of food & drink, a live and silent auction, and the chance to help us celebrate Cammy's 14th Birthday! INFORMATION & REGISTRATION
May
8
Mon
Mark Charamella Memorial Golf Outing & Dinner @ Westover Country Club
May 8 @ 11:00 am
Date: Monday, May 8, 2023 Time: Registration 11:00 am | Shotgun Start 12:15 pm | Tailgate & Dinner 5 pm Location:Westover Country Club (401 South Schuykill Ave, Jeffersonville, PA 19403) Join us for the 10th annual Mark Charamella Memorial Golf Outing & Dinner! "This will be the 10th year of hosting the Mark Charamella Memorial Golf Outing & Dinner. I know that my Dad would be so proud of his family, friends, and colleagues who come from near and far to join us year after year to raise money for Rett syndrome. Each year, when we gather for a fun day on the golf course, I definitely feel his presence and know this is exactly what he would want us to be doing. Please join us for our 10th year and our goal of raising $35,000 in honor of a great man!” - Deb McLaughlin, Event Chair, daughter to Mark and sister to 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
May
23
Tue
Physician Panel: Answering Your Questions About Trofinetide
May 23 @ 1:00 pm – 2:00 pm
Date: Tuesday, May 23, 2023 Time: 1-2 p.m. ET INFORMATION & REGISTRATION In March our community celebrated a first for Rett: trofinetide, now known commercially in the US as DAYBUE™, became the first-ever FDA-approved treatment for Rett syndrome. This approval was the culmination of a journey that began more than a decade ago and succeeded only thanks to the perseverance and commitment of the researchers and families who participated in every stage of the clinical trials. During this 1-hour live webcast, join IRSF and a panel of physicians who treat individuals with Rett syndrome. As principal investigators for the trials, our panel has firsthand knowledge of the potential benefits and side effects of trofinetide. They'll answer your pre-submitted questions, share their anecdotal learnings, and provide information important for any parent considering DAYBUE for their child. Our Panelists:
  • Dr. Tim Benke, Professor of Pediatrics, Pharmacology, & Neurology at the University of Colorado/Children's Hospital Colorado
  • Dr. Robin Ryther, Director of the Rett Spectrum Clinic at Washington University School of Medicine
The panel will be moderated by Carmen Luna, IRSF Clinical Network Manager, and include questions submitted by our community. Medical Disclaimer: All information, content, and material presented in this webinar 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 your specific medical condition.
Jun
9
Fri
Rip it for Rett Golf Tournament @ Dunegrass Golf Club
Jun 9 @ 7:00 am
Date: Friday, June 9th, 2023 Location: Dunegrass Golf Club (200 Old 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
15
Sat
POUND Out Rett 2023 @ IBEW Local 1
Jul 15 all-day
Date: Saturday, July 15, 2023 Time: 12-4 p.m. (Check-in 12p, POUND 1p, Happy Hour 2-4p) 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! INFORMATION & REGISTRATION
Aug
5
Sat
IRSF RettEd Day with UCSF Oakland Children’s CoE @ Camp Arroyo
Aug 5 @ 9:30 am – 4:00 pm
Date: Saturday, August 5, 2023 Time: 9:30 a.m. - 4 p.m. PT Location: Camp Arroyo (5535 Arroyo Rd, Livermore, CA 94550) 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
Sep
9
Sat
Fill Your Freezer for Rett 2023 @ Online
Sep 9 all-day
The Morrison Family is hosting a pig raffle fundraiser in honor of their daughter, Savannah, who has Rett syndrome. Each prize is for half of a processed pig! Two prizes are available, and one person can win both prizes. Tickets are now available for purchase and the drawing will be hosted on Saturday, September 9th. *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
IRSF RettEd Day with UTSW Dallas CoE @ Rett Syndrome & Related Disorders Clinic
Sep 9 @ 9:00 am – 5:00 pm
Date: Saturday, September 9, 2023 Time: 9:00 a.m. - 5 p.m. CT (registration opens at 8:30a) Location: Rett Syndrome & Related Disorders Clinic (Dallas, TX) 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
Pittsburgh Strollathon @ Buffalo Creek Nature Park
Sep 9 @ 10:00 am – 2:00 pm

Date: Saturday, September 9, 2023 Time: 10:00 a.m. - 2 p.m. Eastern Location: Buffalo Creek Nature Park (154 Monroe Road, Sarver, PA 16055) Event Chairs: Terre Gray and Kati Gray (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.
Nebraska Strollathon @ Yanney Heritage Park
Sep 9 @ 2:00 pm – 5:00 pm
Date: Saturday, September 9th, 2023 Time: 1:00 p.m. - 4 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) 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.
Sep
23
Sat
Cincinnati RettConnect Picnic @ Makino Park
Sep 23 @ 10:00 am – 1:00 pm
Date: Saturday, September 23, 2023 Time: 10:00 a.m. - 1 p.m. ET Location: Makino Park (6100 Kopfler Ct, Mason, OH 45040) REGISTER & MORE INFORMATION IRSF’s RettConnect is a free picnic and outing for families to build connections with other members of the Tristate Rett syndrome community. Registration is free but required.
Raleigh Strollathon @ Crowder County Park
Sep 23 @ 10:00 am – 1:00 pm

Date: Saturday, September 23, 2023 Time: 10:00 a.m. - 1 p.m. Eastern Location: Crowder County Park (4709 Ten-Ten Road, Apex, NC 27539) Event Chairs: Gwen Noecker  (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.
Sep
25
Mon
Goals Fore Gracie Golf Tournament @ Thousand Oaks Golf Club
Sep 25 @ 9:00 am
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!
Sep
30
Sat
IRSF RettEd Day with Montefiore CoE @ Tri-State Rett Syndrome Center at Montefiore
Sep 30 @ 9:00 am – 5:00 pm
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
Philadelphia Strollathon @ East Goshen Township Park
Sep 30 @ 10:00 am – 1:00 pm

Date: Saturday, September 30, 2023 Time: 10:00 a.m. - 1 p.m. Eastern Location: East Goshen Township Park (1661 Paoli Pike, West Chester, PA 19380) Event Chairs: Siobhann Bennett (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
1
Sun
Minnesota Strollathon @ Savage Environmental Learning Center McColl Pond
Oct 1 @ 2:00 pm – 5:00 pm
Date: Sunday, October 1st, 2023 Time: 1-4 p.m. CT Location: Environmental Learning Center (13550 Dakota Ave S, Savage, MN 55378) Event Chairs: Mary Kallstrom (Contact Email) Save the date to WALK N' ROLL with us! 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
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!