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!
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 email@example.com
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 (firstname.lastname@example.org)
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 email@example.com
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.
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.
13th Annual St. Louis Virtual Strollathon
Dates: Saturday, October 17, 2020
Event Chairs: Joyce Opinsky & Amy Kreher (firstname.lastname@example.org)
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 (email@example.com) or (919) 426-5554.
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*.
Cincinnati Children’s Hospital: Dr. Shannon Standridge, medical director
Rettsyndrome.org: Paige Nues, host