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!
Date: Saturday, January 25th, 2020 The People’s United Center at Quinnipiac, 305 Sherman Ave, Hamden, CT 06518 For Questions please contact Nicole McAmis at nicole.mcamis@quinnipiac.edu Dr. Fink is a gene therapy neuro-scientist at UC Davis in San Diego. Visit our Education page for upcoming 2020 webinar topics, and to access recording links from past webcasts and associated QA documents. Ever wanted to run through wine country? Well here is your chance! Rettsyndrome.org has been granted ten charity bibs for the 2020 Napa Valley Half & Full Marathon! We are excited for this new partnership and can’t wait to grow our #RettRacer team! Help to end Rett syndrome while you run through wine country at this Boston qualifier race. Whether you plan to run or want to cheer on our team, please note all of the exciting information below! Date: Sunday, March 1st, 2020 To participate as a Rett Racer in the Napa Valley Half or Full Marathon, please follow the steps below. *Note: there is a $2500 fundraising requirement for this event* Rettsyndrome.org will have a tent at location TBD where runners can congregate post-race, Rett families can mingle and RSO will be passing out awareness information to spectators! Please follow this event to stay current on up to date information. We will discuss movement and orthopedic issues in Rett syndrome, how and when these typically occur, and what we can do about it. We will also discuss walking and ambulation across the lifespan, as well as effective strategies at home. Submit your questions or comments when you register. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. RettEd Webinars are a free resource designed to empower families affected by Rett syndrome and their care teams. Help us celebrate Cammy’s 11th birthday by attending and raising a ton of money to find a cure so she can drink with you in Sidebar on her 21st birthday! WHEN | March 21, 2020 5PM – 10PM All you can eat and open bar including craft beer, wine, cocktails from 5-10PM. Presenter bio: Dr. Pam Diener is a highly respected neuroscientist and clinical researcher. 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.
Rett Syndrome Awareness Basketball Game: Quinnipiac vs Fairfield
Time: 4:00pm
MAAC Tournament Kick Off, Rett Syndrome Awareness, Camper Reunion Day
Dr. Kyle Fink and Dr. Dominique Pichard explore the use of CRISPR/Cas9 technologies for gene therapy in Rett syndrome research. This live webcast will be especially helpful to caregivers trying to understand the current state of this research and where we are headed. Questions and comments submitted in advance will be addressed, and there will be time for questions.
Dr. Pichard is Rettsyndrome.org’s Chief Science Officer
Join us for the Napa Valley Half & Full Marathon!
Location: Napa, California
Website (inclusive of hotel details, routes, etc): https://napavalleymarathon.org/
Runners are responsible for all expenses incurred from race (registration, travel, etc).
Dr. Meir Lotan is studying the effectiveness of home-based programs to enhance the functional abilities of girls with Rett syndrome. Dr. Lotan is an internationally renowned Rett syndrome physical therapist, author, and clinical researcher from the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel.
WHERE | Sidebar, 221 N LaSalle St., Chicago, IL
Food provided by Buona Beef including beef, sausage, pasta and salad.
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.
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.