How do parents and caregivers recognize and treat pain in a loved one with Rett, especially if communication is a challenge? This RettEd can help! Dr. Tim Feyma and Dr. Art Beisang of Gillette Children’s, and Dr. Scott Schwantes of Children’s Minnesota, will address the tools you need to identify pain in your loved one and how to treat their pain.
With this in mind, what’s on your mind? Register now and submit your questions and thoughts. There should be time to take write-in questions during the session as well. There is no fee to attend this webinar thanks to your ongoing donor support and that of our Sponsors, but pre-registration is required.
If you missed Pain Part 1 with Univ of MN Researcher Dr. Frank Symons, feel free to View it here prior to April 23rd: https://www.youtube.com/watch?v=XR0uAlsYKmg
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
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.