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.
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.
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.
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!
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
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.
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.
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.