A Turner Syndrome Advocacy Success Story | Turner Syndrome Foundation

A Turner Syndrome Advocacy Success Story

advocacy for Turner syndrome

Engaging in Turner Syndrome (TS) advocacy can be a big task. However, it is one of the most important ways to make a difference for all girls and women who live with TS. In this post, organizing advocate Renee Nowacki shares how her group successfully advocated in the state of Nebraska.

Renee’s Turner Syndrome Advocacy Story

Since 2013, I have been fortunate to coordinate requesting a TS Awareness Month Proclamation in Nebraska. It has been a privilege to raise awareness about TS and learn about the other causes receiving proclamations at the ceremony. 

How the Proclamation Process Works

Each February, Nebraska has a Proclamation Ceremony. Our group submits an application for TS Awareness Month, an important part of TS advocacy in our state, by then. Here’s how the process works:

  • When I plan the upcoming awareness month every year, I always try to incorporate a new theme.
  • Once I am done planning, I go to the committee’s website, usually in late December, to request a proclamation for the February ceremony.
  • The committee asks for a sample proclamation; I use the first proclamation we received in Nebraska as a template.
  • On the day of the ceremony, each group has an opportunity to explain its cause and why awareness is important. 
  • The Governor then signs all of the proclamations.
  • After that, each group has a opportunity to take a picture with the Governor and the written proclamation. 

Throughout the years, TS awareness in our state has grown, with our advocacy positively impacting more people each year. For the first proclamation, I used a text I got from someone in Minnesota’s TS community as an example. Now, I use Nebraska’s own proclamation. Text can also be borrowed from other states’ proclamations.

The Impact of Turner Syndrome Advocacy

The Nebraska TS Support group’s advocacy to create an annual TS Awareness Month in Nebraska has had several positive impacts:

  • Our advocacy has helped spread awareness of what TS is and how people can help members of the TS community.
  • We have connected with the other groups and learned from what they have had to say.
  • We have also gotten to know our Governor. One year, one of our families even got a special photo with him!
  • Members of the Nebraska TS Support Group get together and bond as a community. Some adult butterflies (women with TS) like me even connect by going out to lunch together afterwards.

As you can see from the success story above, the positive impacts of advocating for TS are priceless!

Written by Elizabeth (Liz) Rivera, Turner Syndrome Foundation (TSF) intern and blog writer.


Now that you know how important advocacy is, learn how it’s done!

YOU can create change: How Grassroots Activism Works

Advocacy Working Group

For more info about Renee’s TS journey, click below:

Lincoln Journal Star

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