Powerfully Impacting the TS Community: Legislative Advocacy

   There are many ways to get involved in awareness and work within the Turner syndrome (TS) community. Legislative advocacy is a very important part of that work, as it allows us to communicate directly with our federal, state, and local representatives who have the ability to officially proclaim awareness for TS. National awareness for TS is important as it allows families, educators, and lawmakers to know how to best help those with the condition. Here is all of the information you need to know about legislative advocacy and how to become a Legislative Advocacy Ambassador (LA).

Taking Action

     Advocacy is defined as “the act or process of supporting a cause or proposal: the act or process of advocating something” by Webster’s Dictionary. When advocating for legislative action, we can influence real, lasting changes across our city, state, and even country. There are many ways to get involved in legislative advocacy for TS.

    During Awareness Month 2023 and this past spring, there were many important efforts made for legislative change. 386 people have signed the Petition for Turner Syndrome Awareness, helping to bolster legislative support for awareness and improved care for TS. Many new states (New York, Nebraska, Idaho, and Missouri) also officially recognized February as TS Awareness Month through proclamations. The city of Cranston, Rhode Island also passed a proclamation for awareness, and NJ passes a proclamation for TS every year. In addition, TSF’s Legislative Advocacy Group has held many meetings with representatives all across the country, speaking with them about TS and advocating for the importance of passing resolutions for awareness. 

New York state's Proclamation for Turner Syndrome Awareness for the year 2023

     Legislative advocacy does not only happen during TS Awareness Month, though! In fact, it can be all year round as a Legislative Advocacy Ambassador, which allows us to reach so many more people.

What Is A Legislative Advocacy Ambassador?

LA Ambassador Nicole Topp while speaking to the Cranston City Council about the importance of TS awareness. Cranston passed a proclamation for TS awareness after this.

     A Legislative Advocacy Ambassador (LA) is someone who speaks with their state and federal representatives about TS awareness. They are important because they can help to bring awareness about Turner Syndrome to the legislative sector. As members of Congress and State Legislatures have the ability to create laws, they have the ability to provide assistance to people with TS. The more LAs we have, the greater the chance that we will achieve national awareness for TS. 

     Anyone from the United States can be an LA. This can be someone with TS, a family member or a friend of someone with TS, or someone who is simply interested in helping the TS community. The main job of an LA is to communicate with representatives, particularly ones at the federal level, about TS awareness. This includes their offices via email and phone calls and having in-person or virtual meetings with them. Because of this, LAs should feel comfortable with speaking with Congressional members and staffers. LAs can also focus on doing research related to legislative advocacy. In addition, they may participate in creating social media content geared towards gaining the attention of representatives and the general public. LAs do not need to commit too much time, only about a few hours a week, and they can work on their own timeline. There is also a group meeting on Google Meet to discuss our work at 8 pm on the first Thursday of the month, which generally lasts between a half hour to an hour. 

Attention College Students!

Being an LA is an especially great opportunity for anyone who is interested in pursuing a career in the political and nonprofit sectors as it provides experience in advocating for legislative action and in speaking with representatives at all levels of government. This can be a great internship opportunity for college students seeking experience in this area.

Importance of Legislative Advocacy for Rare Conditions

     Conditions such as Turner syndrome are not commonly known by the public, which can make it difficult for women with TS to receive adequate accommodations and medical treatment. National awareness for TS can allow lawmakers, educators, and the general public to know about and understand the condition. This may lead to numerous positive outcomes: educators will have a better understanding of how to help students with TS, lawmakers will have a better understanding of how to advocate for and protect people with TS, and it will be easier for patients to be diagnosed and to receive the proper assistance earlier on. Read more about how Increased awareness for rare conditions can also reduce feelings of isolation and anxiety amongst patients and families. 

"Legislative Advocacy for TS helps bring about changes by letting our legislators know what TS is and how they can help."

Becoming an LA

     It is very easy to become an LA! All you have to do is click on this link, select “Join the Advocacy Working Group,” and fill out the application. We will then provide you with the necessary materials and will go over everything you need to know to get started. If you ever have any questions, always feel free to ask Helen (hrhoades@tsfusa.org) and she will get back to you as quickly as possible. If this sounds interesting to you, make sure to apply right away! 

     Even if you are not able to commit to being an LA, you can still sign the Awareness Petition! This petition will automatically send a message advocating for a resolution for TS awareness to all of your representatives. This is a very simple way to tell your representatives that you think that national TS awareness is important! If you need assistance in communicating with your representatives when they get back to you, please contact Helen (hrhoades@tsfusa.org) and we will make sure that you get the help that you need. There are also many other volunteer opportunities at TSF, so make sure to take a look at those as well!

Attention Residents of These States!

Gaining national awareness for TS is a big project that needs as much support as possible! We need volunteers from all across the nation to help the TS community by contacting their representatives. The more representatives contacted, the higher the chance there is that a resolution for awareness will be passed!

Our goal is to have members in each of the 50 states.

If you live in any of these states, we want you!

    • California
    • Texas
    • Florida
    • Pennsylvania
    • Illinois
    • Ohio
    • Georgia
    • Michigan
    • North Carolina
    • Indiana

Getting Involved

     There are many ways for anyone wanting to be involved to begin, and each role is vital to making progress for TS awareness and care. We look forward to working together on a brighter future for the TS community!

     The next meeting for the legislative advocacy group will be held on Thursday, August 3rd at 8 pm. We hope to see you there!

Written by Brooke Gonsalves, TSF volunteer blog writer. Edited and designed by Catherine Melman-Kenny, TSF Blog Coordinator.

© Turner Syndrome Foundation, 2023

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