Calendar

3.31.20 U.S. Event Updates and COVID-19 Contingency Announcement

Apr
16
Thu
MORE
At-Home Moves and Stretches for Adults & their Caregivers, feat. Meir Lotan
Apr 16 @ 11:00 am – 12:00 pm

Join us April 16 at 11 a.m. New York time (EDT) with Meir Lotan, PT, PhD, for another Facebook Live session with Rett families. Meir will work with their adult children who have a range of abilities. He will use what they have on-hand to keep their child engaged and moving during this time. Dr. Lotan will conclude with a short presentation on hip subluxation and ways to do safe stretches at home.

All live sessions will be posted on YouTube after the training.

Apr
20
Mon
MORE
Communication Intervention, Part 1, feat. Gill Townend & Theresa Bartolotta 
Apr 20 @ 2:00 pm – 3:00 pm

Join us Monday, April 20 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they introduce Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the first of two sessions on Communication interventions.

This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome.

All live sessions will be posted on YouTube after the training.

Apr
23
Thu
MORE
RettEd: What’s Going Right in Their Brain? Maximizing Neuroplasticity in Therapies
Apr 23 @ 1:00 pm

SPECIAL DAY: THURSDAY – The neuro-anatomy and circuitry assets of our children with Rett syndrome can change over time. Dr. Diener will explain how children can benefit from a well-developed, enriched therapy program. Dr. Diener will also share about her research project on understanding how Virtual Reality technology plays a productive role in OT and functional hand use.

Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher.

Registration & Information

Apr
27
Mon
MORE
Communication Intervention, Part 2, feat. Gill Townend & Theresa Bartolotta 
Apr 27 @ 2:00 pm – 3:00 pm

Join us Monday, April 27 at 2 p.m. New York time (EDT) with Gill Townend, PhD and Theresa Bartolotta, PhD as they conclude Section 8 from the Rett Syndrome Communication Guidelines during a Facebook Live session. This is the second of two sessions on Communication interventions.

This will be a valuable training for parents and professionals who have limited experience working on or advancing communication in both children and adults with Rett syndrome.

All live sessions will be posted on YouTube after the training.

May
1
Fri
MORE
The Great Rett Shootout
May 1 @ 9:00 am

The Shirley family is hosting the 2nd Annual Great Rett Shootout.
Friday, May 1st.

Come out and break some clays as they raise funds on behalf of their daughter Dayton and many others affected by Rett syndrome.

Registration, sponsorships and donation options are listed below. For any questions, please contact Kent & Amanda Shirley at tgrsevents@gmail.com. Be sure to follow their Facebook page for event updates: https://www.facebook.com/TheGreatRettShootout/.

Information & Registration

May
2
Sat
MORE
13th Annual St Louis Strollathon
May 2 @ 9:00 am

13th Annual St Louis Strollathon

Saturday, May 2th, 2020
Registration: 9:00am, Stroll: 10:00am
Location: JCC, 2 Millstone Campus Dr., St. Louis, MO 63146

Event Chairs: Joyce Opinsky & Amy Kreher (stlstrollathon@gmail.com)
Website: www.st-louis.strollathon.org
FB event: https://www.facebook.com/events/481490805883829/

MORE
4th Annual Iowa Strollathon
May 2 @ 9:00 am

4th Annual Iowa Strollathon

Saturday, May 2th, 2020
Time: 11:00am-2:00pm
Location: Kinzler Construction Services, 700 SE Oralabor Rd, Ankeny IA 50021

Event Co-Chairs: Kelly Zwald, Megan Hill Mitchum, Libby Stromer (CureRettIowa@gmail.com)
Website: www.iowa.strollathon.org
FB event: https://www.facebook.com/events/944620542600601/

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

At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we are following the recommendations of the CDC and post-poning or cancelling our upcoming in-person events. At this time, we have decided to cancel the 8th Annual Charamella Golf Tournament for 2020. We apologize for the inconvenience and will be happy to refund any golfers/sponsors.

Information and to Donate

May
12
Tue
MORE
RettEd: Mini Brains in Space – Pushing the Limits of Science
May 12 @ 1:00 pm

Award-winning neuroscientist and Rett syndrome expert Dr. Alysson Muotri, Director of the Stem Cell Program at the University of California at San Diego, will share how he and his lab are pushing the limits of science in the name of your child with Rett syndrome.

Dr. Mutori’s lab uses animal models, neural stem cells, human and other primates’ pluripotent cells, and several tools to investigate brain development, evolution, and neural disorders, including Rett syndrome.

Dr. Muotri has received recent headline attention for his experiment to study the impact of microgravity on human brain development, research which could improve disease modeling for neurodegenerative and developmental disorders as well as give clues into the future of humanity in space.

Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session.

Information & Registration

May
17
Sun
MORE
12th Annual Michigan Strollathon
May 17 @ 9:00 am

12th Annual Michigan Strollathon
Date: Sunday, May 17, 2020
Location: Drake Sport Park, 6801 Drake Rd, West Bloomfield Township, MI 48322
Registration: 10:00am, Stroll: 11:00am

Event Chair: Lisa Fenberg (fenyos@yahoo.com)
Website: www.michigan.strollathon.org
FB event: https://www.facebook.com/events/233787530951786/

Communications Guidelines Pop-up