Events

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

1st Annual South Carolina Virtual Strollathon
Oct 24 all-day

1st Annual South Carolina Virtual Strollathon

Join us for the 1st Annual South Carolina Virtual Strollathon!

Information & Registration

Raise a Glass Against Rett: Virtual Edition
Oct 24 @ 8:00 pm

Raise a Glass Against Rett: Virtual Edition


Date:Saturday, October 24th
Time: 8pm EST

Be inspired by stories from our community, hear our research update, and learn how you can help create a world without Rett. Join Rettsyndrome.org and families for a Virtual Gala this fall. And raise a glass to overpowering Rett!

Information & Registration

Oct
31
Sat
11th Annual Florida Strollathon: Virtual Edition
Oct 31 @ 9:00 am

11th Annual Florida Strollathon: Virtual Edition

Join us for the 11th Annual Florida 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!

Date: October, 31st, 2020
Location: your neighborhood, walking trial or treadmill!
Event Contact: Jackie Ventura (978-500-2495 or jventura@rettsyndrome.org)

Information & Registration

7th Annual Maine Strollathon: Virtual Edition
Oct 31 @ 9:00 am

7th Annual Maine Strollathon: Virtual Edition

Join us for the 7th Annual Maine 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!

Date: October 31, 2020
Location: your neighborhood, walking trial or treadmill!
Stroll Chair: Evie Swan (775-200-8788 or evielynn6@gmail.com)

Information & Registration

Help us over power Rett