Events

Jun
6
Sat
Rett Racer Virtual Summer 5K
Jun 6 all-day
Rettsyndrome.org is excited to be hosting a virtual 5k on June 6th. Wherever you are lace up your shoes and hit your local neighborhood, trail (social distancing required) or treadmill and run (or walk!) to end Rett syndrome!
When: Saturday, June 6th, 2020
Where: Anywhere you are!
How: Register by creating an Everyday Hero page with us here.
·       No registration fee, however, fundraising is encouraged.
·       Once $100 has been raised, we will send you a Rett Racer t-shirt.

·       Share your photos on race day in our Facebook event on or on your Everyday Hero page. Use the hashtag #rettracers.

Any questions, please contact Jackie Ventura at Jventura@rettsyndrome.org or 978-500-2495.

LEARN MORE

Jun
18
Thu
RettGetAway – Postponed
Jun 18 @ 12:00 am – Jun 21 @ 12:00 am

RettGetAway: Postponed

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 pnues@rettsyndrome.org or Jennifer Mosca at info@thekaylamoscafoundation.org

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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

Dec
5
Sat
Vanderbilt Kennedy Center Rett Clinic Town Hall Meeting
Dec 5 @ 11:00 am

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.

Information & Registration

Feb
26
Fri
University of Alabama Birmingham Rett Clinic Town Hall Meeting
Feb 26 @ 5:00 pm

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.

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
28
Wed
9th World Rett Syndrome Congress
Sep 28 – Oct 1 all-day

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.

Congress venue
The QT Hotel, Gold Coast, which is located in Surfers Paradise, Queensland, will remain as the Congress venue.

Presenters
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.
Congress website

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.

https://rettworldcongress.org

An online abstract submission portal has been completed but won’t be available for submissions until early 2022.