Events

Apr
23
Fri
RettEd: What Hurts? Part 2: Addressing and Treating Pain in Rett syndrome
Apr 23 @ 1:00 pm

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

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

May
10
Mon
8th Annual Charamella Golf Tournament
May 10 @ 11:00 am

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

Registration/Dinner

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.

Sponsorship

If you can’t attend the event you can still make a general donation.

Donate

Jul
13
Tue
Samantha Corpus Golf Tournament
Jul 13 @ 8:00 am


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.

Information & Registration

Sep
19
Sun
10th Annual Nebraska Strollathon
Sep 19 @ 10:00 am

Join us for the 10th Annual Nebraska Strollathon!
Please note that we plan to gather in-person at this time but will be monitoring Covid-19 accordingly and may move to a virtual event if needed.

Date: Sunday, September 19th, 2021
Location: ERC Building, Yanney Park, 2020 W 11th Street, Kearney NE 68845
Registration: 10am, Stroll: 11am-1pm
Fundraising pages now open to create teams & personal pages for the Strollathon.

Information & Registration

Oct
2
Sat
5th Annual Virtual Iowa Strollathon
Oct 2 @ 10:00 am

Join us for the 5th Annual Iowa Strollathon- VIRTUALLY!
Cheers to 5 years of the Iowa Stroll!

We are so excited to share that the 5th Annual Iowa Strollathon will be happening this year and we have so many fun ways for you to join in! Due to the Covid-19 pandemic, we have decided to get a little creative in order to continue the momentum to raise funds & awareness to get us one day closer to a world without Rett! This year, we are encouraging you to Stroll your own way- this can be ANYTHING you think of. Some examples could include; a t-shirt fundraiser, a neighborhood Stroll, a garage sale, chili cook-off competition….you name it and you can turn it into a way to raise funds & awareness for Rett. We are here to help you with whatever you come up with and there may be a prize for most creative Stroll .

We will be working hard to make this a fun & engaging experience.

Be sure to follow us on Facebook for exciting updates!

We plan to host a celebration on Saturday, October 2nd- TBD on if it will be virtual or in person!

Information & Registration

Oct
3
Sun
15th Annual Minnesota Strollathon
Oct 3 @ 10:00 am

Join us for the 15th Annual Minnesota Strollathon!
We miss you and can’t wait to be together again. We hope to have a live, in-person Stroll in October 2021- more details to come! Until then, stay safe & be well.

Fundraising pages now open to create teams & personal pages for the Strollathon.
Event Chair: Mary Kallstrom
Location: Savage Environmental Learning Center, Savage MN

Information & Registration

Oct
16
Sat
2nd Annual South Carolina Strollathon
Oct 16 @ 10:00 am

Join us for the 2nd Annual South Carolina Strollathon!
We hope to safely gather in-person this Fall and will keep you updated as the event becomes closer!

Fundraising pages now open to create teams & personal pages for the Strollathon.
Event Chairs: Stephanie Winckler, Danyell Flowers
Follow us on Facebook for more event info & updates.

Information & Registration

Oct
23
Sat
14th Annual St. Louis Strollathon
Oct 23 @ 10:00 am

Join us for the 14th Annual St. Louis Strollathon Fall 2021!
We miss you and can’t wait to be together again. We hope to have a live, in-person Stroll on Saturday, October 23rd, 2021- more details to come! Until then, stay safe & be well.

Fundraising pages now open to create teams & personal pages for the Strollathon.
Event Chairs: Joyce Opinsky, Amy Kreher & Amanda Sommer (stlstrollathon@gmail.com)
Follow us on Facebook for continued updates.

Information & Registration

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.