Events

Oct
31
Sat
11th Annual Florida Strollathon: Virtual Edition
Oct 31 @ 9:00 am

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)

Information & Registration

7th Annual Maine Strollathon: Virtual Edition
Oct 31 @ 9:00 am

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)

Information & Registration

Nov
7
Sat
8th Annual San Antonio Virtual Strollathon
Nov 7 all-day

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

Information & Registration

Nov
15
Sun
Rett Education 2020, Online Conference
Nov 15 – Nov 21 all-day

Rett Education 2020

Communicate, Educate, Advocate
7-day online conference with international expert speakers

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.

REGISTRATION & INFORMATION

Nov
18
Wed
Children’s Hospital of Philadelphia Rett Clinic Town Hall Meeting
Nov 18 @ 12:00 pm

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

Information & Registration

Dec
5
Sat
Montefiore Rett Clinic Town Hall Meeting
Dec 5 @ 3:00 pm

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.

Information & Registration

Dec
8
Tue
RettEd: What Do They See? Vision in Rett Syndrome
Dec 8 @ 1:00 pm

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?

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.

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.

REGISTER

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.

 

Dec
12
Sat
UCSF Benioff Children’s Hospital Oakland Rett Clinic Town Hall Meeting
Dec 12 @ 2:00 pm

UCSF Benioff Children’s Hospital Oakland Rett Clinic Town Hall Meeting

Date: December 12
Time: 12pm

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:
UCSF Benioff Children’s Hospital Oakland: Dr. Mary Jones, medical director & Katie Hale
Rettsyndrome.org: Paige Nues, host

Information & Registration

Help us over power Rett