The TSF Legislative Advocacy Committee is a volunteer group that works together to advocate for Turner syndrome on a local, state, and national level in the U.S. Anyone can get involved in this effort!
Keep reading to learn what legislative advocacy is, why it’s important, what the Committee’s projects entail, how to get involved with legislative advocacy, and ways to advocate.
What is Legislative Advocacy?
Legislative Advocacy means working with local, state, and federal representatives to make them aware of the unique needs of women with Turner syndrome and encourage any legislation, supports, or protections that may help them live full lives.
Why is Advocacy Important?
Advocacy is important to TSF because women with Turner syndrome can experience challenges in medical, educational, relational, or employment areas of life. The good news is that we are aware of these possibilities, so the Advocacy Committee looks for ways to mitigate them, either through legislation or support of funding in areas like research.
Current members of the Committee shared why they participate, saying:
- “Because your community needs to know [about Turner syndrome].” -Lusvy Cruz
- “Because we can do better.” -Bridget Malone
- “Because no one should feel alone.” -Helen Rhoads
- “Because it doesn’t hurt to ask (says my mom).” -Victoria Kunkel
What Are the Committee’s Projects?
Past projects of the group include:
- Bills and proclamations in several states have been passed, such as New Jersey, New York, and Georgia, recognizing February as Turner Syndrome Awareness Month. Committee members advocate for this recognition by contacting their state legislators and urging them to make this effort to bring awareness to TS.
- An ongoing campaign of the Committee is to get signatures on TSF’s Petition for Patient Care, which is used continually to show legislators that there is widespread support for this cause.
- The Committee is actively working on a campaign supporting prenatal testing and the inclusion of Turner syndrome in testing.
The Committee’s for the next year is to have at least one member from all fifty states. We’d love to have members join us in writing letters, making phone calls, and speaking on behalf of patients with Turner syndrome.
If this sounds daunting, no worries! We have a system set up to make it easy, and we’re here to talk you through.
To learn more about the Legislative Advocacy Committee from current members, watch this video.
How Can I Get Involved?
If this sounds like just the opportunity you’ve been looking for, we have two “next steps” for you.
If you haven’t already, please sign the TSF Petition for Patient Care.
Next, we’d love you have you sign to be a volunteer with us! Just fill out the application, and we’ll get you signed up for the volunteer orientation.
If you have or are looking to develop the following characteristics, we’re looking for you!
- Problem solving/thinking outside the box or creatively
- Talking on the phone or in person
- Writing letters or emails
We’d love to have new members who want to put their best foot forward and develop new skills and experience!
Written By Helen Rhoads and Bridget Malone, TSF Advocacy Committee members and designed by Adrianna Verzolini
© Turner Syndrome Foundation, 2026
Discover more from Turner Syndrome Foundation
Subscribe to get the latest posts sent to your email.
