Events

Sep
19
Sat
Run For Rett 2020 – Virtual
Sep 19 all-day

WHEN: Saturday, September 19, 2020
LOCATION: Busse Woods, Grove 28
Elk Grove Village, IL
Contact info: Diane Ross (diross62@aol.com).

From the serious runner to the recreational runner, to family members and friends of all ages the Run For Rett is an event you don’t want to miss. Make a difference in the life of those affected by Rett Syndrome and join us for the Run For Rett 5K Run/Walk & 1 Mile Fun Run.

Information & Registration

Facebook Event

Oct
3
Sat
Rett Gets Rocked Ultramarathon
Oct 3 @ 12:00 pm – Oct 4 @ 8:00 pm

Rett Gets Rocked Ultramarathon

A weekend in which participants complete an ultra marathon of their choosing–from 50K to 100 miles, or from 6 to 48 hours. They can stretch their event over the month of October if desired. Proceeds from the event go to Rettsyndrome.org and the Rett Spectrum Clinic at St. Louis Children’s Hospital! Register for RGRVUW by purchasing a race shirt!

REGISTER

Jay Murry will be doing his ultra-marathon in his local sub-division, the Vineyards. The Rett Gets Rocked headquarters will be located at: 756 Napa Lane, St. Charles MO 63304 on Sat 10/3 from 12pm- Sun 10/4 at 8pm. To donate to Jay, please click here.

To follow along on Facebook, visit: https://www.facebook.com/24hourjaymurry/

For more information, contact Jay at jmsproductions3@gmail.com

Oct
13
Tue
RettEd: Clinical Trial Update
Oct 13 @ 1:00 pm

Please join Rettsyndrome.org on Tuesday, October 13, 2020 at 1:00pm Eastern Time (New York) for status updates on clinical trial and research enrollment opportunities in the U.S.

Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how we all have a role to play in research progress.

With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

Information & Registration

Oct
24
Sat
Raise a Glass Against Rett: Virtual Edition
Oct 24 @ 8:00 pm

Raise a Glass Against Rett: Virtual Edition


Date:Saturday, October 24th
Time: 8pm EST

Be inspired by stories from our community, hear our research update, and learn how you can help create a world without Rett. Join Rettsyndrome.org and families for a Virtual Gala this fall. And raise a glass to overpowering Rett!

Information & Registration

Dec
5
Sat
Hannah’s Artshow Reception
Dec 5 @ 2:00 pm

Hannah Grace Carpenter

Artist Reception

Date: December 5
Time: 2:00-4:00pm
Location: 148 North Main Street, Downtown Historic Mooresville

Important Information

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.

 

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

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