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!
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.
Hannah Grace Carpenter
Artist Reception
Date: December 5
Time: 2:00-4:00pm
Location: 148 North Main Street, Downtown Historic Mooresville
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.
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
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
Mark was a devoted husband, father and friend that touched many lives through his enthusiasm and love of life. Every job, school, team or organization that he was involved with became a part of him. He had a great ability to connect with people and shared his passion for life with everyone that he met. As a father of a daughter with Rett syndrome, Mark did everything he could to make her life better. It is in his honor that we gather his family and friends to celebrate a life well lead and to give to a cause that was close to Mark’s heart.
To learn more, you may view the brochure here.
Join us on Monday, May 10th, 2021
Due to the Covid-19 pandemic, we will be following the CDC guidelines inclusive of masks & social distancing.
11 – 12pm: Golf registration & Lunch
12:30pm: Shotgun Start
5pm: Tailgate, food truck
SIGN UP AS A FOURSOME OR INDIVIDUAL
All sponsors will need to provide company logo/artwork via email to Deb McLaughlin markgolfrett@gmail.com.
All payments & artwork must be received by May 3rd.
If you can’t attend the event you can still make a general donation.
You Can’t Miss the Final Samantha Corpus Golf Tournament
Samantha’s Farewell 15
July 13, 2021
Please join us for the legendary Samantha Corpus Golf Tournament, On Tuesday July 13th at The Blackhawk Country Club, as we will be hosting our 15th and Final Tournament. Due to the Pandemic we had to postpone the tournament last year.
In spite of all the uncertainty the outpouring of love and support continued and many of you asked and hoped that we would be able to conclude this epic event in grand style.
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.