After much consideration, our RettGetAway committee has decided to postpone the June 2020 RettGetAway in San Diego. The health of our children is of utmost concern. Once it is deemed safe and sound to convene large groups in public spaces again, we will evaluate a future Rett GetAway.
Many were working to create this ‘life without limits’ opportunity. A special thanks to the Kayla Mosca Foundation, Surfing Madonna, Surfin’ Fire, Merlin’s Magic Wand in association with Legoland San Diego, The Cassara Carlsbad by Hilton, our CA State Rep Sherri Brady, and ACADIA Pharmaceuticals.
We hope that all of our families and partners emerge from this situation whole, intact, and able to plan an even more extraordinary RettGetAway!
If you have made any travel bookings for the RettGetAway, we advise you to cancel them now while forgivable and with no penalty.
Rettsyndrome.org will be returning the group Legoland tickets awarded by Merlin’s Magic Wand so that a future award can be made again to either our group or to individuals who may choose to apply at another time (they only allow one Magical Day Out per family, one time)
We appreciate your understanding, and we hope that you all stay healthy and safe.
Please direct any questions to Paige Nues at firstname.lastname@example.org or Jennifer Mosca at email@example.com
Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting
Date: Sat, December 5, 2020
Time: 11:00 AM – 12:30 PM
Are you wanting to 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 an opportunity to re-connect and re-center with your Rett community?
We’ll be sharing insights on this, and much more during our upcoming Town Hall Meeting – live-streamed – on Saturday, December 5, 2020, at 11am -12:30pm (CT).
Join us as Rettsyndrome.org, and the Rett Clinic team at Vanderbilt Kennedy Center discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.
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 Friday, February 26, 2021, at 4pm -5:30pm Central time.
Join us as Rettsyndrome.org, and the Rett Clinic team at UAB discuss clinical care recommendations and appointments, clinical trials, the research process, and family empowerment opportunities.
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.
9th World Rett Syndrome Congress in Australia
Dates: 28th Sept to 1st Oct 2022
9th World Rett Syndrome Congress has been postponed due to COVID until 2022.
The QT Hotel, Gold Coast, which is located in Surfers Paradise, Queensland, will remain as the Congress venue.
Presenters who originally accepted RSAA’s invitation to speak at the Congress are being notified of the latest postponement and will be reinvited. Hopefully, the revised dates will not affect their availability.
Work continues on building the Congress website https://rettworldcongress.org to a point where it will meet the information needs of potential attendees. Online registration for the Congress is now open which may be of particular interest to Australian families who have included, or wish to include, coverage of the registration fees in their National Disability Insurance Scheme (NDIS) plans.
An online abstract submission portal has been completed but won’t be available for submissions until early 2022.