Events

Sep
19
Sat
Run For Rett 2020 – Virtual
Sep 19 all-day

WHEN: Saturday, September 19, 2020
LOCATION: Busse Woods, Grove 28
Elk Grove Village, IL
Contact info: Diane Ross (diross62@aol.com).

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.

Information & Registration

Facebook Event

Children’s Hospital Colorado Rett Clinic Town Hall Meeting
Sep 19 @ 10:00 am

Rett Syndrome Clinic at Children’s Hospital Colorado Town Hall, feat. Dr. Benke, Tristen Dinkle & More

Date: Sat, Sep 19, 2020
Time: 10:00 AM – 11:30 AM

Are you having difficulty understanding 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?

We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Saturday, September 19, 2020, at 10am -11:30am (MT).

Join us as Rettsyndrome.org, the Rett Clinic team at Children’s Hospital Colorado, and members from the Rocky Mountain Rett Association (RMRA) discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.

Information & Registration

Sep
20
Sun
15th Annual Portland Strollathon
Sep 20 all-day

 

Join us for the 15th Annual Portland Strollathon: Virtual Edition! After thoughtful consideration, we have decided to go VIRTUAL for the Portland Stroll!

Sunday, September 20th: any time!
Stroll at your leisure through your neighborhood, local park or hop on the treadmill!
Follow us on Facebook for event updates, contests and more!
Event Chair: Lacey & Leigh Calvert

Information & Registration

Sep
24
Thu
Washington University Rett Clinic Town Hall Meeting
Sep 24 @ 12:00 pm

Washington University Rett Spectrum Clinic Town Hall, feat. Drs. Ryther, Dr. Weisenberg & More

Date: Thu, Sep 24, 2020
Time: 12:00 PM – 1:30 PM CDT

Are you having difficulty understanding 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?

We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Thursday, September 24, 2020, at 12pm -1:30pm (CDT).

Join us as Rettsyndrome.org presents the Rett Clinic team at St. Louis Children’s Hospital to discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.

Information & Registration

Sep
26
Sat
17th Annual Cincinnati Strollathon: Virtual Edition
Sep 26 @ 9:00 am

17th Annual Cincinnati Strollathon: Virtual Edition

Join us for the 17th Annual Cincinnati Strollathon- VIRTUALLY!
At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year’s Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience!

Be sure to follow us on Facebook to stay up to date on our fun virtual activities: facebook.com/Cincinnati-Tri-State-Strollathon

Date: September, 26th, 2020
Location: your neighborhood, walking trail or treadmill!
Event Chairs: Brittney Gibson, Jim Magato, & Jennifer Magato

Information & Registration

Sep
30
Wed
The Blue Bird Circle Rett Center Town Hall Meeting
Sep 30 @ 12:00 pm

The Blue Bird Circle Rett Center at Texas Children’s Hospital Town Hall, feat. Dr. Glaze, Dr. Suter & Dr. Motil

Date: Wed, Sep 30, 2020
Time: 12:00 PM – 1:30 PM CDT

Are you having difficulty understanding 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?

We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Wednesday, September 30, 2020, at 12pm -1:30pm (CT).

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

Information & Registration

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 jmsproductions3@gmail.com

Oct
4
Sun
14th Annual Minnesota Virtual Strollathon
Oct 4 @ 9:00 am

14th Annual Minnesota Virtual Strollathon

Join us for the 14th Annual Minnesota Virtual Strollathon!

  • Sunday October 4th, 2020
  • Location: Virtual
  • Event Chair: Mary Kallstrom (marykallstrom@q.com)

Information & Registration

New Jersey Strollathon
Oct 4 @ 10:00 am

Join us for the 12th Annual New Jersey Strollathon- VIRTUALLY!

At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the Covid-19 pandemic, we will be going Virtual this year! We have some tricks up our sleeve to make this a fun & engaging event.

Date: Sunday, October 4th, 2020
Location: Your neighborhood, local walking trail or treadmill!
Follow us on Facebook for contests, event updates and more!
Event Chair: Leslie Greenfield (leslieg417@gmail.com)

Information & Registration

Oct
10
Sat
Rush University Rett Clinic Town Hall Meeting
Oct 10 @ 11:00 am

Rush University Rett Clinic Town Hall, feat. Drs. Heydemann, Buhrfiend and Berry-Kravis

Date: Sat, Oct 10, 2020
Time: 11:00 PM – 12:30 PM

Please join us Saturday, October 10, 2020 at 11:00 am Central Time (Chicago) with Dr. Peter Heydemann, Dr. Colleen Buhrfiend, Dr. Elizabeth Berry-Kravis, and the leadership from Rettsyndrome.org (RSO) and the Rett Syndrome Association of Illinois (RSAI) for an encouraging update about clinical care recommendations and appointments; clinical trials; the research process; and family empowerment at this point in time. There is no fee to attend this Town Hall, but pre-registration is required.

There will be time for QA at the end of the presentation. We encourage you to submit your questions during Registration to enable our Speakers to best prepare their answers to address what’s on your mind in the time allowed. If a question comes to mind after you have Registered, you may email your question for any of the Presenters to Paige Nues at pnues@rettsyndrome.org

This live webcast will be especially helpful to caregivers trying to understand current state of medical appointments, treatment, clinical trials, and research at Rush University Medical Center.

Information & Registration