Midwest Rett Syndrome Foundation Logo

Midwest Rett Syndrome Foundation

Fully committed to improving the lives of all who live with Rett Syndrome

Welcome to the Midwest Rett Syndrome Foundation!

It is the mission of the Midwest Rett Syndrome Foundation to fund important Rett Syndrome research initiatives, and promote wellness and education of families within our community that are affected by Rett Syndrome.

Study Opportunity

University of Minnesota Rett Syndrome

Teaching Communication Skills in Rett Syndrome: Intervention Delivered In-home over Video-conferencing

Purpose: We are interested in examining the effects of behavior assessment conducted via telehealth on acquisition of communicative behavior for girls and women with Rett syndrome.

Where do these studies take place? Assessment and training of communication is often most beneficial when studies take place in the natural settings of the individual. Therefore, assessment and intervention sessions will take place in homes and other natural settings. We will connect with your family via telehealth (video conferencing) to coach the assessments and interventions. 

What do telehealth sessions look like? Telehealth sessions use video - conferencing software to connect you in your home remotely with study personnel at the University to receive assessment, observation, and coaching on communication training.

Do I need special equipment/computer skills? No, we can loan needed equipment and will provide technology coaching to connect and manage the technology.

 Are there any costs to participating? There is no cost and no compensation to participate in the study. All materials will be provided free of charge. 

Are there potential benefits to participating? There may be potential benefits to participating through gains in communication and to contributing to the understanding of communication intervention in Rett syndrome.     

Criteria: All ages, ability levels, and diagnoses (Classic, atypical Rett syndrome, MECP2 duplication syndrome) welcome to participate.

 If you are interested in participating, please contact Jessica Simacek, the project coordinator, at 612-626-7653 or sima0034@umn.edu 

Informational Brochure

Rett Syndrome Drug Resarch Opportunity

Sarizotan (focuses on respiratory abnormalities)

Some highlights:

“The STARS clinical research study is evaluating an investigational medication to see if it is safe and effective in reducing the number of daytime apnea and other breathing episodes in people who have Rett syndrome with irregular breathing.

Approximately 130 people who have Rett syndrome with irregular breathing will participate in the STARS study. A person with Rett syndrome may be eligible to join the study if he or she:

• Is at least 6 years old
• Weighs at least 22 pounds or 10 kilograms
• Has episodes of irregular breathing while awake during the day
• Meets other study participation requirements

Sites: Alabama, California, Illinois, Texas
Visit the study website to complete a questionnaire: www.RettSTARS.com

Gillette Children's participating in Neuren Pharmaceuticals conducting Phase II study of Trofinetide (NNZ-2256) in Rett Syndrome

Neuren Pharmaceuticals will be conducting a Phase II of Trofinetide, also known as NNZ-2566, for females age 5-15 with Rett Syndrome. The study will be taking place in various locations across the US, one of which being at Gillette Children's Specialty Healthcare in St. Paul, MN.

The study is currently listed on the clinicaltrials.gov website.(https://clinicaltrials.gov/ct2/show/NCT02715115…), and you can also visit www.rettstudy.com for further information on the study.

Gillette Children's Specialty Healthcare is not yet able to recruit participants, as they are waiting to receive approval to conduct the study through their Institutional Review Board. This should occur in the coming weeks.

University of Minnesota seeking participants for Rett Syndrome Study

The goal of this study is to understand parent perspectives on and satisfaction with their daughter or son with Rett syndrome’s education and individualized education plan (the IEP).

ALL parents of children with Rett syndrome who are receiving school-based services and have a recent (within the past year) individualized education plan (IEP from kindergarten to twelfth grade are welcome to participate.

If you are interested in participating, please contact Kelsey Quest, Graduate Research Assistant, Department of Educational Psychology, University of Minnesota at 315-406-9798 or email: quest012@umn.edu or Frank Symons, Ph.D., Department of Educational Psychology, University of Minnesota at 612-626-8697 or email: symon007@umn.edu.

For more information, click here.

Gatsby Gala Photos available!

Links to two Snapfish albums of photographs from the Gatsby Gala Affair can be found on the event page!

University of Minnesota Rett Syndrome Research: New Opportunities

The University of Minnesota is looking to recruit families of individuals with Rett syndrome and related disorders for three new research studies at the University of Minnesota. If you are interested in participating, please contact Breanne Byiers, the project coordinator, at 612-626-7110 or byier001@umn.edu.

The first two projects (EEG and sleep) are running right now, and they can see families as soon as they are able.

The last one (communication in schools) is pending approval, but they are looking to identify some possible families as soon as possible so that they can get it running quickly once the project is approved.

Click the Links below for additional information on each project:
EEG Study Sleep Study Communication in schools

MRSRA to become MIDWEST Rett Syndrome Foundation!

As announced today (4/20/2013) at the Rett Syndrome Education Event at Gillette Children's Specialty Healthcare, MRSRA will soon become the MIDWEST Rett Syndrome Foundation!

Over the years of partnering with Gillette Children's Specialty Healthcare, Gillette staff has shared with the MRSRA board that, while Gillette serves families of Rett patients from outside Minnesota, many of these families are reluctant to contact the Minnesota Rett Syndrome Research Association for support, guidance or resources.

In light of that, the MRSRA Board voted recently to change our organizations name to the MIDWEST Rett Syndrome Foundation!

The next several months will bring many changes to MRSRA's identity and website, so stay tuned here and to our Facebook Page as we transition to the Midwest Rett Syndrome Foundation!

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!

Send a suggestion

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

IRSF Research to Reality logo

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!