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]
Oct
13
Tue
RettEd: Clinical Trial Update
Oct 13 @ 1:00 pm
Please join Rettsyndrome.org on Tuesday, October 13, 2020 at 1:00pm Eastern Time (New York) for status updates on clinical trial and research enrollment opportunities in the U.S. Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how we all have a role to play in research progress. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Information & Registration
Dec
8
Tue
RettEd: What Do They See? Vision in Rett Syndrome
Dec 8 @ 1:00 pm
Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Tristen Dinkel, RN about Cortical Visual Impairment (CVI) in Rett syndrome. Our loved ones with Rett syndrome often exhibit particular eye movements or gaze patterns. Is this a motor behavior or visual strategy? What do our children see? How do they process visual information? Register now, and submit your questions. Pre-submitted relevant questions will be addressed, and there will be time for write-in questions during the session. REGISTER Our RettEd Webcasts are Free, but registration is required. RettEd Webcasts are recorded. When you register, you will receive a link to the recording within 1-2 days after the presentation. Rettsyndrome.org is committed to standing with you today, to fighting to transform your tomorrow. Check out our other upcoming webcasts, as well as an incredible library of past webcasts on multiple Rett topics: www.rettsyndrome.org/education.  
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