Events are one of the best ways to get involved with Rettsyndrome.org and play an integral part in funding research for treatment and a cure for Rett syndrome. Events are fun, help raise awareness, and connect you to our community of amazing families. Participating in an event (or starting your own) will have a direct impact on the lives of many people affected by Rett syndrome. Whether you tee off at a golf tournament or dance at a gala, there is something for everyone, all year long! Find an event near you or contact us to start your own!
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. 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. Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher. 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. The Shirley family is hosting the 2nd Annual Great Rett Shootout. 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/. Saturday, May 2th, 2020 Event Chairs: Joyce Opinsky & Amy Kreher (stlstrollathon@gmail.com) Saturday, May 2th, 2020 Event Co-Chairs: Kelly Zwald, Megan Hill Mitchum, Libby Stromer (CureRettIowa@gmail.com) 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. 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. 12th Annual Michigan Strollathon Event Chair: Lisa Fenberg (fenyos@yahoo.com)
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.
Friday, May 1st.
13th Annual St Louis Strollathon
Registration: 9:00am, Stroll: 10:00am
Location: JCC, 2 Millstone Campus Dr., St. Louis, MO 63146
Website: www.st-louis.strollathon.org
FB event: https://www.facebook.com/events/481490805883829/4th Annual Iowa Strollathon
Time: 11:00am-2:00pm
Location: Kinzler Construction Services, 700 SE Oralabor Rd, Ankeny IA 50021
Website: www.iowa.strollathon.org
FB event: https://www.facebook.com/events/944620542600601/
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.
Date: Sunday, May 17, 2020
Location: Drake Sport Park, 6801 Drake Rd, West Bloomfield Township, MI 48322
Registration: 10:00am, Stroll: 11:00am
Website: www.michigan.strollathon.org
FB event: https://www.facebook.com/events/233787530951786/
