Events

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

Feb
27
Sat
Winter Trivia Fun Night
Feb 27 @ 7:00 pm

Test your trivia knowledge and support Rett syndrome!

Looking for something fun to do this winter while stuck inside and want to support Rettsyndrome.org at the same time? Get your thinking caps on, gather some friends (virtually) and join us for our winter Trivia Night Virtual Showdown fundraiser!

Date: Saturday, February 27
Time: 7pm EST
Price: $100 (for a group of 10)
Details: Space is limited as we are capping out at 20 groups of 10. The ticket purchaser is the ‘team captain’ and will need to fill out a link after purchasing tickets with the team member names & email addresses.

Please direct any questions to Jackie Ventura at JVentura@rettsyndrome.org

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

Apr
30
Fri
The Great Rett Shootout
Apr 30 all-day

We are excited to be able to host the event this Spring! We will be following the guidelines of the CDC and may have to implement social distancing and face coverings dependent upon the CDC guidelines in place at the end of April. Come out and break some clays with us as we raise money for a very special cause. 100% of all tournament proceeds go to RettSyndrome.org!

Experienced and Novice shooters are welcome!

Date: April 30, 2021
Details: $750 per 4-man team
$200 per individual
Mulligan Package: 6 Shots for $25
Carts included, ammunition not included

Information & Registration