Events

Dec
5
Sat
Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting
Dec 5 @ 11:00 am

Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting

Date: Sat, December 5, 2020
Time: 11:00 AM – 12:30 PM

Are you wanting to understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like an opportunity to re-connect and re-center with your Rett community?

We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Saturday, December 5, 2020, at 11am -12:30pm (CT).

Join us as Rettsyndrome.org, and the Rett Clinic team at Vanderbilt Kennedy Center discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.

Information & Registration

Feb
26
Fri
University of Alabama Birmingham Rett Clinic Town Hall Meeting
Feb 26 @ 5:00 pm

Are you wanting to better understand the current state of clinical care recommendations and appointments? Maybe you’re wondering which clinical trials and future research look the most promising? And what about other local resources for your loved one and family? Perhaps you would like to re-connect and re-center with your Rett syndrome community?

We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Friday, February 26, 2021, at 4pm -5:30pm Central time.

Join us as Rettsyndrome.org, and the Rett Clinic team at UAB discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.

Information & Registration

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

Jul
30
Fri
Rettsyndrome.org Summer Trivia Night
Jul 30 @ 7:00 pm

Save the Date to join us for another Trivia Night with Rettsyndrome.org! You’ll have a chance to compete for prizes, test your trivia knowledge & support Rett syndrome at the same time! Registration & more details will be available soon!

  • Date: Friday, July 30th at 7pm EST/ 6pm CST
  • Space will be limited so check back for information on team registration.
  • Sponsorship opportunities will be available and information will be shared soon!
  • Please direct any questions to Tim Frank at TFrank@rettsyndrome.org.
Sep
19
Sun
10th Annual Nebraska Strollathon
Sep 19 @ 10:00 am

Join us for the 10th Annual Nebraska Strollathon!
Please note that we plan to gather in-person at this time but will be monitoring Covid-19 accordingly and may move to a virtual event if needed.

Date: Sunday, September 19th, 2021
Location: ERC Building, Yanney Park, 2020 W 11th Street, Kearney NE 68845
Registration: 10am, Stroll: 11am-1pm
Fundraising pages now open to create teams & personal pages for the Strollathon.

Information & Registration

Oct
2
Sat
5th Annual Virtual Iowa Strollathon
Oct 2 @ 10:00 am

Join us for the 5th Annual Iowa Strollathon- VIRTUALLY!
Cheers to 5 years of the Iowa Stroll!

We are so excited to share that the 5th Annual Iowa Strollathon will be happening this year and we have so many fun ways for you to join in! Due to the Covid-19 pandemic, we have decided to get a little creative in order to continue the momentum to raise funds & awareness to get us one day closer to a world without Rett! This year, we are encouraging you to Stroll your own way- this can be ANYTHING you think of. Some examples could include; a t-shirt fundraiser, a neighborhood Stroll, a garage sale, chili cook-off competition….you name it and you can turn it into a way to raise funds & awareness for Rett. We are here to help you with whatever you come up with and there may be a prize for most creative Stroll .

We will be working hard to make this a fun & engaging experience.

Be sure to follow us on Facebook for exciting updates!

We plan to host a celebration on Saturday, October 2nd- TBD on if it will be virtual or in person!

Information & Registration

Oct
3
Sun
15th Annual Minnesota Strollathon
Oct 3 @ 10:00 am

Join us for the 15th Annual Minnesota Strollathon!
We miss you and can’t wait to be together again. We hope to have a live, in-person Stroll in October 2021- more details to come! Until then, stay safe & be well.

Fundraising pages now open to create teams & personal pages for the Strollathon.
Event Chair: Mary Kallstrom
Location: Savage Environmental Learning Center, Savage MN

Information & Registration

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
23
Sat
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 (stlstrollathon@gmail.com)
Follow us on Facebook for continued updates.

Information & Registration

Sep
28
Wed
9th World Rett Syndrome Congress
Sep 28 – Oct 1 all-day

9th World Rett Syndrome Congress in Australia

Dates: 28th Sept to 1st Oct 2022

9th World Rett Syndrome Congress has been postponed due to COVID until 2022.

Congress venue
The QT Hotel, Gold Coast, which is located in Surfers Paradise, Queensland, will remain as the Congress venue.

Presenters
Presenters who originally accepted RSAA’s invitation to speak at the Congress are being notified of the latest postponement and will be reinvited. Hopefully, the revised dates will not affect their availability.
Congress website

Work continues on building the Congress website https://rettworldcongress.org to a point where it will meet the information needs of potential attendees. Online registration for the Congress is now open which may be of particular interest to Australian families who have included, or wish to include, coverage of the registration fees in their National Disability Insurance Scheme (NDIS) plans.

https://rettworldcongress.org

An online abstract submission portal has been completed but won’t be available for submissions until early 2022.