Events

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
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

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

Oct
17
Sat
13th Annual St. Louis Virtual Strollathon
Oct 17 @ 9:00 am

13th Annual St. Louis Virtual Strollathon

Dates: Saturday, October 17, 2020
Location: Virtual
Event Chairs: Joyce Opinsky & Amy Kreher (stlstrollathon@gmail.com)

Information & Registration

7th Annual Raleigh Strollathon: Virtual Edition
Oct 17 @ 10:00 am

7th Annual Raleigh Strollathon: Virtual Edition

Join us for the 7th Annual Raleigh Strollathon VIRTUALLY!

Please join us on Saturday, October 17th at 11am EST on Facebook for our ‘virtual’ event. Be sure to wear your past or present Stroll apparel and share photos on our FB page.

Follow our Facebook page for more info, contests and more!

Facebook page: https://www.facebook.com/NCIRSFStrollRaleigh/

Questions? Contact: Gwen Noecker (comerga@yahoo.com) or (919) 426-5554.

Information & Registration

Cincinnati Children’s Hospital Rett Clinic Town Hall Meeting
Oct 17 @ 12:00 pm

Cincinnati Children’s Hospital Rett Clinic Town Hall Meeting, presented by Rettsyndrome.org

Date: Sat, Oct 17, 2020
Time: 12:00 PM – 1:30 PM EDT

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, October 17, 2020, at Noon – 1:30pm (ET).

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

Then during the last half hour, we’ll be taking your pre-submitted questions*.

Guest Presenters:
Cincinnati Children’s Hospital: Dr. Shannon Standridge, medical director
Rettsyndrome.org: Paige Nues, host

Information & Registration

Oct
24
Sat
18th Annual SoCal Virtual Picnic & Strollathon
Oct 24 all-day

18th Annual SoCal Virtual Picnic & Strollathon

Join us for the 18th Annual SoCal Picnic & Strollathon – Virtual Edition!

  • Date: October, 24th, 2020
  • Location: Virtual
  • Event Contact: Sherri Brady (562-619-0109 or mom2lcm@gmail.com)

Information & Registration