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!
Rett syndrome is a complex disorder, and inaccurate or invalid facts cause more harm than good. So join this webinar to learn the facts. Hear from experts and parents. More than empowering, it can be life-saving for our children with Rett syndrome. Even though the topic is difficult to talk about, we know you think about it. Let’s dispel the myths. We believe that transformative treatments will come from gene therapy, medications and neuro-habilitative therapies. Our research strategy targets every possible approach so that we continue to not just improve longevity, but to decrease syndrome impact. We remain committed to creating solutions for today, to improve lives today, while we work to create a world without Rett syndrome. With this in mind, what’s on your mind? Register now and submit your questions and thoughts. Questions and comments submitted in advance will be addressed, and there will be plenty of time for write-in questions during the session. Date: Sat July 26th 2020 July 30-Aug 03 Casting 4 A Cure is a loose band of compadres and compatriots who fly fish and fundraise to find a cure for Rett Syndrome. We have pulled together many of the fly fishing industry’s leaders and they have taken on the cause like it is their own. Come join us at one of the events or become a sponsor and help the thousands of girls affected by this crippling neurological disorder. 15th Annual Samantha Corpus Golf Tournament Rett syndrome is a complex disorder, and sharing of accurate information is more than empowering, it can be life-saving for our children with Rett syndrome. So join this webinar to learn the facts. Even though the topic is difficult to talk about, we know you think about it. In terms of pain, Dr. Symons’ areas of specific research include (a) the reliable and valid assessment of pain in children and adults with significant communicative and motor impairments; (b) the relation between behavioral and biological variables as markers for altered pain; (c) modifying/adapting sensory testing; and (d) the relation between pain and problem behavior, specifically self-injury. 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. 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 a little creativity and out-of-the-box thinking can expand everyone’s horizons! 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. Join Us for the 9th Annual Nebraska Strollathon At Rettsyndrome.org, the health & well being our of community is of utmost importance. Due to the Covid-19 pandemic, we have decided to host this year’s Stroll VIRTUALLY! We have some tricks up our sleeve to make it a fun & engaging experience! Saturday, September 12th 2020 WHEN: Saturday, September 19, 2020 From the serious runner to the recreational runner, to family members and friends of all ages the Run For Rett is an event you don’t want to miss. Make a difference in the life of those affected by Rett Syndrome and join us for the Run For Rett 5K Run/Walk & 1 Mile Fun Run. September 19, 2020 Our Ed Days are for everyone wanting to connect with experts in the field of Rett syndrome especially families, caregivers, educators, clinicians, and therapists. Participants will enjoy a rich and informative day of topics and discussions covering research updates, medical and therapeutic intervention strategies, communication strategies, and more. Registration opening soon. Join us for the 17th Annual Cincinnati Strollathon- VIRTUALLY! Be sure to follow us on Facebook to stay up to date on our fun virtual activities: facebook.com/Cincinnati-Tri-State-Strollathon Date: September, 26th, 2020
Please join us WEDNESDAY, July 15, 2020 (note: this is not on our usual Tuesday) at 1:00 pm Eastern Time (New York) with Dr. Alan Percy from the University of Alabama at Birmingham and Primary Investigator for the Natural History Study, along with a panel of experts, as we discuss Myths and Facts around life expectancy in Rett syndrome.9th Annual Scramble for a Cure
Cost: $300/Team
Location: The Chief Golf Course, Bellaire MI
Contact: Sue Knight (231) 495-9794 or SueKnight@charter.netCasting 4 A Cure 2020 – Cancelled
Tuesday, May 19, 2020
Blackhawk Country Club Danville, CA
Please join us Tuesday, August 11, 2020 at 1:00 pm Eastern Time (New York) with Dr. Frank Symons, Associate Dean for Research and Policy, Department of Psychology, and the Center for Neurobehavioral Development at the University of Minnesota as we discuss issues of pain in Rett syndrome.
Please join us Tuesday, September 8, 2020 at 1:00pm Eastern Time (New York) with Rettsyndrome.org and a panel of creative experienced parents who are ready to share their Rett Life Hacks, especially how to plan and execute inclusive and enjoyable dress-up and gift-giving celebrations for the whole family such as birthday parties, Halloween, school field trips and the upcoming holidays. “Life Hacks” are simple and clever tips and techniques for accomplishing tasks more easily and efficiently, overcoming many of our common Rett-life frustrations in simple and deliciously clever ways.
9th Annual Nebraska Strollathon – Virtual Edition
Event Chairs: Jacy Horst & Megan Ladenburger & Elly Gullion
Information & Registration
TIME: 8:30 AM
LOCATION: Busse Woods, Grove 28
Elk Grove Village, IL
Contact info: Diane Ross (diross62@aol.com).Southeast Rettsyndrome.org Ed Day
Greenwood, SC (in partnership with Greenwood Genetic Center)17th Annual Cincinnati Strollathon: Virtual Edition
At Rettsyndrome.org, the health and well-being of those in our community are of utmost importance. Due to the COVID-19 pandemic, we have decided to host this year’s Stroll VIRTUALLY. We have some tricks up our sleeve to provide a fun and engaging virtual experience!
Location: your neighborhood, walking trail or treadmill!
Event Chairs: Brittney Gibson, Jim Magato, & Jennifer Magato
