Welcome to the Minnesota Rett Syndrome Research Association!
It is the mission of the Minnesota Rett Syndrome Research Association to fund important Rett Syndrome research initiatives, and promote wellness and education of families within our community that are affected by Rett Syndrome.
MRSRA, U of M, Gillette to collaborate in Research Project
Dr. Frank Symons, a University of Minnesota researcher, is working to build a collaborative partnership between the U of M, the Minnesota Rett Syndrome Research Association and Gillette Children's Specialty Healthcare and Lifetime Clinics, to make a difference in the lives of girls and women with Rett Syndrome.
Dr. Symons and his students are developing a set of related projects based directly on a survey conducted in 2009. They hope to address many of the behavioral and health issues that girls and women with Rett Syndrome live with. The studies to be conducted will help researchers examine issues related to pain, language and communication, challenging behaviors, and autonomic functioning.
Dr. Symons and his group are looking for girls and women with Rett Syndrome and their families to participate in the studies. Some of the studies can be accomplished in the home, while others can be done in a clinic setting during an already scheduled Gillette visit.
Dr. Symons adds, "One of our goals is to successfully apply for federal research funding through the International Rett Syndrome Foundation (IRSF) and the National Institutes of Health (NIH). We think that we have a great opportunity to improve clinical and educational outcomes and meaningfully contribute to scientific knowledge about Rett Syndrome."
If you have any questions, would like additional information, or would like your child/ward to participate in one or more of the studies, please contact Dr. Frank Symons at (612)626-8697, or email at symon007@umn.edu.
View details of the projects here
Updated Section: Meet the MRSRA Board Members
In an effort to add content and update the MRSRA website, there is now an updated section on the MRSRA Board Members here.
Help us make the MRSRA site better, and more useful! Please submit your comments and suggestions on what you'd like to see more of, less of, some of or none of on the website!
Where we are
New
Google Map shows where Rett families are distributed throughout the
state.
Click here to be taken to the new Google Map, which shows the communities where those known to MRSRA with Rett Syndrome live.
Please note that the map does not show specific addresses or locations of families in order to protect privacy. Locations shown only indicate the community where the family/individual lives.
Research to Reality
Click on the link to donate to the International Rett Syndrome Research Foundation, as all donations will be matched up to $1 million by the Pioneer Fund.
International Rett Syndrome Foundation - Research to Reality Campaign page
International Rett Syndrome Foundation -Research to Reality Campaign FAQ
Don’t delay - thousands of girls and women with Rett syndrome are waiting!
Thank you for your support!