Events

Apr
13
Tue
RettEd: Let’s Hear It For The Boys! Males with MECP2
Apr 13 @ 1:00 pm

We’ve learned a lot since the ‘80s—and it’s time to set the record straight! Dr. Bernard Suter of Texas Children’s Hospital will share what we know about males with Rett, males with MECP2 duplication, and current and future study options.

We’ll also explore why males have not been included in clinical trials so far and if males will be approved for future Rett treatments. Dr. Suter will discuss a new biomarker study specifically for males with MECP2 mutations. Finally, we’ll share how IRSF advocates for males with industry partners.

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.

Information & Registration

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

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