Events

Oct
13
Tue
RettEd: Clinical Trial Update
Oct 13 @ 1:00 pm

Please join Rettsyndrome.org on Tuesday, October 13, 2020 at 1:00pm Eastern Time (New York) for status updates on clinical trial and research enrollment opportunities in the U.S.

Rett syndrome is a complex disorder, and sharing accurate information is more than empowering, it can be life-altering for everyone. Join this webinar to learn how we all have a role to play in research progress.

With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Those submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

Information & Registration

Dec
8
Tue
RettEd: What Do They See? Vision in Rett Syndrome
Dec 8 @ 1:00 pm

Join us Tuesday, December 8th, at 1:00 pm (EDT) to hear from Tristen Dinkel, RN about Cortical Visual Impairment (CVI) in Rett syndrome. Our loved ones with Rett syndrome often exhibit particular eye movements or gaze patterns. Is this a motor behavior or visual strategy? What do our children see? How do they process visual information?

Register now, and submit your questions. Pre-submitted relevant questions will be addressed, and there will be time for write-in questions during the session.

REGISTER

Our RettEd Webcasts are Free, but registration is required. RettEd Webcasts are recorded. When you register, you will receive a link to the recording within 1-2 days after the presentation.

Rettsyndrome.org is committed to standing with you today, to fighting to transform your tomorrow. Check out our other upcoming webcasts, as well as an incredible library of past webcasts on multiple Rett topics: www.rettsyndrome.org/education.

 

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