Events

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

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 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.

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.

 

Jan
19
Tue
RettEd: How Your Child’s Data is Shaping the Future of Rett Research
Jan 19 @ 1:00 pm

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.

Information & Registration

Feb
9
Tue
RettEd: Empowering Your Child’s Care Providers
Feb 9 @ 1:00 pm

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!

Information & Registration

Mar
9
Tue
RettEd: Rett Syndrome Communication Guidelines – Real World Application
Mar 9 @ 1:00 pm

Communication is one of Rett syndrome’s biggest challenges. As such, individuals with Rett struggle to
connect, build relationships, and make their wishes known. This critical RettEd webcast can help, no
matter where a person is on their Rett journey, whether newly diagnosed or an adult who is no longer
receiving services.

Theresa Bartolotta, PhD, CCC-SLP, along with a speech therapist and parent, will unpack The
Communications Guidelines so families, physicians, and caregivers will know how to use this important
tool in real-life situations. They’ll share how they’ve implemented its strategies to enhance
communication, explain critical information, and answer your questions. Please submit your questions
early, and we’ll also take a few during the webcast as time allows.

Pre-registration is required.

Order the Communication Guidelines handbook today –
https://www.rettsyndrome.org/communications-guidelines/

Information & Registration

Apr
13
Tue
RettEd: Let’s Hear It For The Boys! Males with MECP2
Apr 13 @ 1:00 pm

We’ve learned a lot since the ‘80s—and it’s time to set the record straight! Dr. Bernard Suter of Texas Children’s Hospital will share what we know about males with Rett, males with MECP2 duplication, and current and future study options.

We’ll also explore why males have not been included in clinical trials so far and if males will be approved for future Rett treatments. Dr. Suter will discuss a new biomarker study specifically for males with MECP2 mutations. Finally, we’ll share how IRSF advocates for males with industry partners.

With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required.

Information & Registration

Apr
23
Fri
RettEd: What Hurts? Part 2: Addressing and Treating Pain in Rett syndrome
Apr 23 @ 1:00 pm

How do parents and caregivers recognize and treat pain in a loved one with Rett, especially if communication is a challenge? This RettEd can help! Dr. Tim Feyma and Dr. Art Beisang of Gillette Children’s, and Dr. Scott Schwantes of Children’s Minnesota, will address the tools you need to identify pain in your loved one and how to treat their pain.

With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required.

If you missed Pain Part 1 with Univ of MN Researcher Dr. Frank Symons, feel free to View it here prior to April 23rd: https://www.youtube.com/watch?v=XR0uAlsYKmg

Information & Registration

May
8
Sat
Run for Rett
May 8 – May 16 all-day

Run for Rett

WE ARE GOING VIRTUAL AGAIN!!!

When: Saturday, May 8th – Sunday, May 16th
Where: Any time and any place

Our responsibility is to the health and well being of our participants and volunteers for the Run For Rett. The decision to change to a virtual event was thoughtfully made with extreme concern for our entire Rett syndrome community and our dedicated participants and volunteers.

Thank you for your understanding, cooperation and support.
How you participate is totally up to you. You can run the 5K, walk a mile or sit in your recliner.
No matter what you choose you are a winner because you are making a difference in the lives of those impacted by Rett syndrome.

We encourage you to register online. It’s easy to register at Raceroster.com/46429
Follow us on Facebook:
Click here – Run Rett 2021

Jul
30
Fri
Rettsyndrome.org Summer Trivia Night
Jul 30 @ 7:00 pm

Save the Date to join us for another Trivia Night with Rettsyndrome.org! You’ll have a chance to compete for prizes, test your trivia knowledge & support Rett syndrome at the same time! Registration & more details will be available soon!

  • Date: Friday, July 30th at 7pm EST/ 6pm CST
  • Space will be limited so check back for information on team registration.
  • Sponsorship opportunities will be available and information will be shared soon!
  • Please direct any questions to Tim Frank at TFrank@rettsyndrome.org.
Sep
19
Sun
10th Annual Nebraska Strollathon
Sep 19 @ 10:00 am

Join us for the 10th Annual Nebraska Strollathon!
Please note that we plan to gather in-person at this time but will be monitoring Covid-19 accordingly and may move to a virtual event if needed.

Date: Sunday, September 19th, 2021
Location: ERC Building, Yanney Park, 2020 W 11th Street, Kearney NE 68845
Registration: 10am, Stroll: 11am-1pm
Fundraising pages now open to create teams & personal pages for the Strollathon.

Information & Registration