Legislative & Public Health Advocacy for Turner Syndrome

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During Turner Syndrome (TS) Awareness Month, we hope you are discovering the many different tools communities can utilize to advocate for positive change. The TS community needs new leaders to help bring about this change. Will you be the one to pave a new path for people affected by TS in your community by supporting our cause? Read below to learn about two tried-and-true ways to take action–legislative and public health advocacy. This post will discuss what legislative and public health advocacy entail, how they provide value to the TS community, and the steps you can take to help the TS community thrive.

About Legislative Advocacy

The goal of advocacy is to educate and create awareness on specific issues and rights. Legislative advocacy is one type of advocacy. It’s the effort and action to direct change in legislation on behalf of a cause

Legislative advocacy is done by working with lawmakers and 

gaining their support to advocate for a population’s specific needs. One of the most important ways legislators can impact a cause is through passing a local ordinance. These ordinances promote and create local laws that protect affected members of the community.

Another important way legislators can impact a cause is through a bill with funding or regulation. Funding is crucial, especially for communities supported by non-profit organizations like the Turner Syndrome Foundation (TSF). Funding provides necessary financial resources for the organization’s initiatives, activities, and services. 

Regulations can be effective in all levels of government and can also be crucial for communities. Laws with regulations protect the public from health risks and increase the availability of resources like healthcare.

About Public Health Advocacy

Public health advocacy is reaching out to health organizations on behalf of a specific cause. This is important, since it’s the responsibility of these organizations to ensure communities are getting the health resources they need.

Sadly, genetic disorders are often overlooked when fulfilling this responsibility. As a result, it’s one of the TS community’s goals to have health organizations across the U.S. become more aware of genetic conditions like TS. 

To help patients with TS in your community put public health advocacy to good use, consider completing this anonymous survey.

How Advocacy Can Help the TS Community

Legislative and public health advocacy are critical, impactful mediums of change that can help patients with TS and support their unique needs, including:

  • funds for medical research initiatives;
  • a national task force for TS;
  • specialized centers of care;
  • educational programs for medical professionals, patients, teachers, and caregivers;
  • mental health support;
  • designation of February as TS Awareness Month nationally;
  • insurance reimbursement for diagnostics, treatment, equipment, and long-term care;
  • post-diagnosis action plans; and
  • awareness among endocrinologists and other medical professionals.

How To Advocate for the TS Community

TSF can always use a helping hand from community members like you! We have created a Legislative Advocacy Packet for those who want to get involved and contact legislators regarding our mission. In this packet, you will find our goals and tips for contacting legislators. You will also find specific details on what to say to your legislators, along with materials to give them.

Exposure is a key component in making the TSF voice heard. A great way to do this is by canvassing. Canvassing can raise community awareness and bring passionate people to our cause. The Legislative Advocacy Packet provides instructions on how to share information in your community. It also includes flyers and images for social media that you can post or share with others. 

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The Importance of Self-Advocacy

Order this booklet for helpful information on self-advocacy

Self-advocacy is also essential for positive change. Self-advocacy helps you get your voice heard directly. 

If you or someone you know has life challenges due to things like having a disability or chronic medical condition, you know that using self-advocacy is important and difficult to do. Despite the difficulty, you should still do it because it helps you:

  • obtain necessary support and services,
  • build confidence to reach out and ask questions,
  • learn to make important personal decisions, and
  • provides you and other people with challenges like TS the tools and experiences to have greater control over your life.
Being involved in your community is a great way to make important connections and provide others with important information.

Other Ways To Support the TS Community

As mentioned above, advocating for TS awareness is important, as it means more therapies and lifesaving medical treatments will be accessible. Therefore, it will be easier for TS patients to overcome their various financial and medical challenges and excel overall. 

Here are a few other ways you can promote TS awareness:

Lucas' Story: How I Became a TS Advocate

At a very early age, I was exposed to the complexity of our healthcare system. My upbringing is why I chose to study public health and economics at Rutgers University. I wanted to create a voice for those who are not able to do so themselves. Working in healthcare, I noticed many inefficiencies and disarray in our healthcare policy. At all levels of our system, poor access to care and treatment has left patients unrepresented and in a disadvantaged position.

I wanted to be a voice for a cause, and that is where I came across TSF. My goal at first was to utilize my connections in healthcare to bring attention to TS. By creating a network of healthcare workers, we not only increased education and awareness, but also increased the likelihood of identifying symptoms of TS as early as possible, while also providing necessary resources to those affected on a local level.

In my attempts to reach a greater audience, my challenge now is to integrate my knowledge of health policy to collaborate with 

legislators and health policy specialists across different industries to improve outcomes for patients with TS.

Takeaways & Action Steps

  • Legislative advocacy is used to direct change in legislation on behalf of a cause. These changes can be made with legislative ordinances, regulations and funding. 
  • This type of advocacy is important since it can help others learn more about TS as well as help the TS community with their medical, financial, mental and other needs.
  • You can help the TS community by learning how to canvas using our Legislative Advocacy Packet as a guide.
  •  Self-advocacy is important since it helps you build the confidence to reach out, ask questions, and obtain the resources you need to gain greater control over your life.
  • There are other ways that you can help the TS community besides using advocacy. Some examples include signing TSF’s petition to help raise TS awareness and organizing a fundraiser to help TSF with aiding the TS community. 
  • I hope that after listening to my story and the various ways you can advocate for people in your community who have TS, you can help enact positive change for the cause!

Written by Lucas Coyle, TSF volunteer blog writer. Edited by Prabhat Sharma, TSF volunteer blog editor, and Susan Herman, TSF volunteer lead blog editor.



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 © Turner Syndrome Foundation, 2022.

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