Board

Turning Interest Into Action

Founded in 2002 as the Minnesota Rett Syndrome Research Association (MRSRA), the organization was granted 501(c)(3) charitable designation in the same year. This was done primarily as a means to more easily channel funds raised locally to the international research organizations that we support.

In 2013, the MRSRA board voted to change the name of the organization to the Midwest Rett Syndrome Foundation. The change in the name was made to align with what the organization represents, and to reflect that the community we serve extends beyond the borders of one state.

Our primary activity has historically been our annual charity fundraiser. Because of this activity and our website, many newly diagnosed families have contacted MRSF officers looking for advice and support. As such, our organization has come to realize a much greater need in the Midwest to promote wellness and education in a variety of ways to families of those affected by Rett Syndrome.