Events

Sep
8
Tue
RettEd: Holiday Life Hacks for Rett Syndrome feat. a panel of parent experts
Sep 8 @ 5:00 pm – 6:30 pm

Please join us Tuesday, September 8, 2020 at 5:00pm Eastern Time (New York) with Rettsyndrome.org and a panel of creative experienced parents who are ready to share their Rett Life Hacks, especially how to plan and execute inclusive and enjoyable dress-up and gift-giving celebrations for the whole family such as birthday parties, Halloween, school field trips and the upcoming holidays. “Life Hacks” are simple and clever tips and techniques for accomplishing tasks more easily and efficiently, overcoming many of our common Rett-life frustrations in simple and deliciously clever ways.

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 a little creativity and out-of-the-box thinking can expand everyone’s horizons!

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

Sep
9
Wed
Maximizing Communication in Rett Syndrome: Strategies for Engagement & AAC with RSO and NWRSA
Sep 9 @ 7:30 pm – 8:30 pm

Please join us Wednesday, September 9th at 4:00pm Pacific Time with Theresa Bartolotta, PhD, CCC-SLP and Bethany Stanley, MS, CCC-SLP as they provide Northwest Rett Syndrome families, educators and therapists an understanding of how to enhance communication in individuals with Rett syndrome.

Theresa Bartolotta, PhD, CCC-SLP will present an overview of the recently released Rett Syndrome Communication Guidelines and discuss how families can use the valuable tool to engage providers in using evidence-based strategies to assess and improve communication in Rett syndrome.

Bethany Stanley, MS, CCC-SLP will provide an in-depth explanation of how Augmentative and Alternative Communication (AAC) can be used, with all types of communicators, to establish or advance communication skills in their family members. The speakers will include videos and practical strategies that families can implement to assist the individual with Rett syndrome at home and in the community.

Information & Registration

Sep
12
Sat
9th Annual Nebraska Strollathon: Virtual Edition
Sep 12 @ 9:00 am

9th Annual Nebraska Strollathon – Virtual Edition

Join Us for the 9th Annual Nebraska Strollathon

At Rettsyndrome.org, the health & well being our of community is 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 make it a fun & engaging experience!

Saturday, September 12th 2020
Event Chairs: Jacy Horst & Megan Ladenburger & Elly Gullion
Information & Registration

Sep
17
Thu
Gillette Children’s Hospital Rett Clinic Town Hall Meeting:
Sep 17 @ 7:00 pm

Rett Syndrome Services – Phalen Clinic at Gillette Children’s Hospital Town Hall, feat. Dr. Beisang, Dr. Feyma and more

Date: Thu, Sep 17, 2020
Time: 7:00 PM – 8:30 PM

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 17, 2020, at 7pm -8:30pm (CT).

Join us as Rettsyndrome.org, the Rett Clinic team at Gillette Children’s Hospital, the Rett research team at University of Minnesota, and members from the Midwest Rett Syndrome Foundation (MRSF) discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.

Information & Registration

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

Help us over power Rett