Grassroots Activism for Turner Syndrome: YOU Can Make a Difference!

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

Struggling with finding ways to make a positive impact in your community? Through grassroots activism and legislative advocacy for Turner Syndrome, we can all make a difference!

Grassroots Activism

Through grassroots activism and legislative advocacy, we can help implement solutions to benefit those in a particular state or in the entire country. This advocacy can lead to widespread change.

Grassroots activism:

  • encourages public awareness and outreach;
  • uses canvassing to build support for a cause; and
  • encourages community leaders, nonprofits, and professional associations to unite for a cause.

Examples of grassroots activism include:

  • writing petitions;
  • calling supporters, communities, etc. and encouraging them to advocate for a cause; and
  • a nonprofit working with other organizations to unite for a cause.

Legislative Advocacy

Legislative advocacy involves:

  • educating legislators about an issue, its importance to a community, and policy goals related to the issue; and
  • providing legislators with resources to learn more about the community’s issue, mission and policy goals.

How Legislation Is Made

It is crucial to know how legislation is made (how it proceeds from a bill to a law) when conducting legislative advocacy. In simple terms, this is the process:

  • A bill is introduced in one chamber of a state or the U.S. Congress (House of Representatives or Senate) by one of its members. The bill is then introduced in the other chamber by one of its members.
  • Committee hearings then allow both pieces of legislation to be heard. This provides the public (us) the chance to hear and provide feedback.
  • After the hearings, both chambers have floor votes on the legislation.
  • For state legislation, the Governor reviews the bill. For federal legislation, the President reviews it. Then the Governor or President decides to approve/sign it (passing the bill into law) or disapprove it (veto).


Legislative advocacy is often not easy. Several factors can make it a difficult process.:

  • It is a slow process.
  • Amendments to the bill can slow down the process even more.
  • There can be different versions of the same bill in each house.
  • All bills that don’t become law at the end of a legislative session–two years, on average–die.
  • If the bill dies, the process must start over.

How To Conduct Legislative Advocacy

  • Find local politicians on key committees that relate to Turner Syndrome. Then, write letters, send emails, and make phone calls, telling them about Turner Syndrome. Try to meet up with them. Provide them with resources that explain what cause you’re advocating for, and why.
  • Use social media to tell others about the cause, and ask them to join your advocacy mission.
  • After the creation of a bill, send follow-up materials and continue telling key legislators about its importance.

Other Ways To Make a Difference for the Turner Syndrome Community

  • Coordinate individual activities with TSF; together, we can have a greater impact!
  • Staff a table at local and statewide events to tell more people about TS and help spread awareness and support for the cause.
  • Track state and federal legislation and inform TSF and other advocacy organizations of recent developments.
  • Write letters to legal editors, legislators, and government officials about your issue to help raise awareness.

Get Involved!

Grassroots activism and legislative advocacy for Turner Syndrome are effective ways to create change in the community. Help the Turner Syndrome community by joining the Advocacy Working Group! As a member, you can:

  • increase resources for medical research,
  • expand healthcare and education options for girls and women with Turner Syndrome,
  • increase Turner Syndrome awareness and advocacy, and
  • help our community live healthier and happier lives.

To learn more:

Read about Public Advocacy

Download the Advocacy Packet

Watch the webinar “Your Role in Legislative Advocacy”

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