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 jmsproductions3@gmail.com
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.
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.
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
Rett Education 2020
Communicate, Educate, Advocate
7-day online conference with international expert speakers
Date: November 15-21, 2020
Details: Unlike physical conferences where you can end up sitting through content you just don’t need, Rett Education 2020 – Communicate, Educate, Advocate is delivered entirely online. Dip in and watch the specific talks you want or catch them all. It’s up to you! All talks will be available to watch again or watch later, as long as you have registered.
Children’s Hospital of Philadelphia Rett Clinic Town Hall Meeting
Date: November 18
Time: 12:00pm
Are you wanting to better understand 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? Perhaps you would like to re-connect and re-center with your Rett syndrome community?
We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Wednesday, November 18, 2020, at 12pm -1:30pm (ET).
Join us as Rettsyndrome.org, and the Rett Clinic team at Children’s Hospital Philadelphia 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:
Children’s Hospital of Philadelphia: Dr. Eric Marsh, medical director
Rettsyndrome.org State Representative
Rettsyndrome.org: Paige Nues, host
Tri-State Rett Syndrome Center Children’s Hospital at Montefiore Town Hall, feat. Dr. Djukic & More
Date: Sat, Dec 5, 2020
Time: 3:00 PM – 4:30 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 Saturday, December 5, 2020, at 3pm -4:30pm (ET).
Join us as Rettsyndrome.org, and the Rett Clinic team at Children’s Hospital at Montefiore discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.
Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Tristen Dinkel, RN about Cortical Visual Impairment (CVI) in Rett syndrome. Our loved ones with Rett syndrome often exhibit particular eye movements or gaze patterns. Is this a motor behavior or visual strategy? What do our children see? How do they process visual information?
Register now, and submit your questions. Pre-submitted relevant questions will be addressed, and there will be time for write-in questions during the session.
Our RettEd Webcasts are Free, but registration is required. RettEd Webcasts are recorded. When you register, you will receive a link to the recording within 1-2 days after the presentation.
Rettsyndrome.org is committed to standing with you today, to fighting to transform your tomorrow. Check out our other upcoming webcasts, as well as an incredible library of past webcasts on multiple Rett topics: www.rettsyndrome.org/education.
Date: Tuesday, January 19
Time: 1-2:30pm (EST)
For the last 16 years, the NIH-funded Natural History Study for Rett Syndrome has been collecting data from over 1000 Rett families. Hear from NHS Principal Investigators, Drs. Alan Percy, Jeffrey Neul, and Eric Marsh on how your data has helped change the management of children and adults with Rett syndrome and improved longevity in those with Rett syndrome.
Learn how you can still take part in the NHS before its completion in July 2021.
And find out how your participation in the new Rett Clinical Disease Registry, launching in August 2021, will benefit Rett syndrome drug development.
Register for FREE, and submit your questions to be addressed during the webinar. Once registered, you will receive a confirmation email containing information about joining the webcast.
Join us Tuesday, February 9, 2021, at 1:00 pm EST to learn how you can empower your care team to provide the best quality care for 
your loved one with Rett syndrome. Dr. Tim Benke from Colorado Children’s Hospital, Katie Hale, NP from Katie’s Clinic at UCSF Oakland, and Melissa Kennedy, Executive Director at Rettsyndrome.org, will unpack the Rett Syndrome Primary Care Guidelines.
You’ll learn how to use this evidence-based tool in partnership with your child’s physicians and specialists.
The Primary Care Guidelines provides suggested visit schedules by clinical area of assessment, specific concerns to look for, and timelines for follow up appointments. To ensure the best care for your loved one with Rett, join us on February 9 to take a deeper dive. We encourage physicians and health care providers to attend this webinar; invite them to register as well!