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!

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
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