Events are one of the best ways to get involved with Rettsyndrome.org and play an integral part in funding research for treatment and a cure for Rett syndrome. Events are fun, help raise awareness, and connect you to our community of amazing families. Participating in an event (or starting your own) will have a direct impact on the lives of many people affected by Rett syndrome. Whether you tee off at a golf tournament or dance at a gala, there is something for everyone, all year long! Find an event near you or contact us to start your own!
Join us for the 11th Annual Florida Strollathon- VIRTUALLY! Date: October, 31st, 2020 Join us for the 7th Annual Maine Strollathon- VIRTUALLY! Date: October 31, 2020 Join us for the 8th Annual San Antonio Virtual Strollathon! Communicate, Educate, Advocate Date: November 15-17, 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. Date: November 18 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: Date: Sat, Nov 21, 2020 Are you wanting to 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 an opportunity to re-connect and re-center with your Rett community? We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Saturday, November 21, 2020, at 11am -12:30pm (CT). Join us as Rettsyndrome.org, and the Rett Clinic team at Vanderbilt Kennedy Center discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities. Date: Sat, Dec 5, 2020 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 Dr. Tim Benke 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: December 12 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 Saturday, December 12, 2020, at 11am -12:30pm (PT). Join us as Rettsyndrome.org, and the Rett Clinic team at UCSF 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:
11th Annual Florida Strollathon: Virtual Edition
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!
Location: your neighborhood, walking trial or treadmill!
Event Contact: Jackie Ventura (978-500-2495 or jventura@rettsyndrome.org)7th Annual Maine Strollathon: Virtual Edition
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!
Location: your neighborhood, walking trial or treadmill!
Stroll Chair: Evie Swan (775-200-8788 or evielynn6@gmail.com)8th Annual San Antonio Virtual Strollathon
Rett Education 2020
7-day online conference with international expert speakersChildren’s Hospital of Philadelphia Rett Clinic Town Hall Meeting
Time: 12:00pm
Children’s Hospital of Philadelphia: Dr. Eric Marsh, medical director
Rettsyndrome.org State Representative
Rettsyndrome.org: Paige Nues, hostVanderbilt Kennedy Center Rett Clinic Town Hall Meeting
Time: 12:00 PM – 1:30 PMTri-State Rett Syndrome Center Children’s Hospital at Montefiore Town Hall, feat. Dr. Djukic & More
Time: 3:00 PM – 4:30 PM 
Dr. Tim Benke is the Director of Research at the Neuroscience Institute at Children’s Hospital Colorado, where he is also the Medical Director of the Rett Clinic. He also serves as an investigator in Rett Syndrome Natural History Study and Rettsyndrome.org’s Medical Advisor.UCSF Benioff Children’s Hospital Oakland Rett Clinic Town Hall Meeting
Time: 12pm
UCSF Benioff Children’s Hospital Oakland: Dr. Mary Jones, medical director & Katie Hale
Rettsyndrome.org: Paige Nues, host
