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
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)
1st Annual South Carolina Virtual Strollathon
Join us for the 1st Annual South Carolina Virtual Strollathon!
- Saturday October 24th 2020
- Location: Virtual
- Event Chairs: Stephanie Gives Winckler and Danyell Flowers
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)
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)
8th Annual San Antonio Virtual Strollathon
Join us for the 8th Annual San Antonio Virtual Strollathon!
- Saturday November 7th, 2020
- Location: Virtual
- Event Chair: Ashley Cotham
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.