IRSF Regional Representative Program
The International Rett Syndrome Research Foundation Regional Representative Program has been established to provide emotional support, information and resources to families affected by Rett syndrome. It is used as a vehicle to promote family gatherings and fundraisers to support IRSF’s mission. It is an integral part of IRSF.
Mission Statement
The Regional Representative program strives to provide supportive local
contacts for families affected by Rett syndrome, promote public
awareness and knowledge of RTT and IRSF, support fundraising efforts
that will promote research towards finding a cure for RTT and connect
families through gatherings and outreach.
Minnesota's Regional Representative - Liz Wright
Liz' Welcome Message:
My name is Liz Wright and I am excited to be the new IRSF Regional Representative for Minnesota! My son Joseph (17) and Sofia (RTT/8) and I have lived in Vadnais Heights since 2004. We moved from St. Paul’s Midway area, where I had lived most of my life. When Sofie was only 2, and not yet diagnosed with Rett syndrome, I knew that my 100 year old Midway house was not going to work for my disabled child or my aging back. It was with great sadness that we packed up and moved to the "burbs." I hardly consider Vadnais Heights the suburbs anymore, as it is really only a 10 minute drive downtown, but at the time I felt like we were moving to the sticks! It was one of the best decisions I ever made for my family. The White Bear Lake School District has been wonderful not only for Joseph, but Sofia as well. She has had many of the same teachers and therapists since pre-school and I consider them an extension of our family.
I have not been very involved with IRSF over the years, but have decided now is the time and why not dive in head-first!? These are exciting times for Rett research and every day I feel more confident in my own ability to care for my daughter. My wish as regional rep is to possibly make some of the struggles that we went through a little easier for others and also to advocate and raise awareness throughout our great state. It is through collaboration, support and outreach that we can best serve our girls and their families. I look forward to getting to know all of our families, old-timers and newbies alike! Please take the time to introduce yourselves and to contact me at anytime with questions or concerns.
Sincerely,
Liz Wright
elizzybetty@comcast.net
651-649-0104
For more information about the program please contact Jennifer Endres at jendres@rettsyndrome.org or
by calling 508-362-2220.