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Public Advocacy
“Children are the future, and they are an extension of a parent’s love and hope for a life well lived. As for me, my daughter is the light and inspiration to everything I do, especially in my leadership role with the Foundation. She is fortunate in so many ways, yet her struggles, albeit mild, keep me up at night dreaming of solutions that will enable her a lifetime of good health and fulfillment. This quest for health and happiness is universal and far reaching, beyond borders, cultures, ethnicities or social boundaries. Turner Syndrome is a random disorder. A new baby girl is born every eight hours with TS. We need to learn more about its causes, treatments and how to improve outcomes.” Laura Fasciano, Founding President & Director
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Lend your voice. Speak up and speak out!
Join the Band Wagon... Declare February as Turner Syndrome Awareness Month
Share your personal story as to how this condition affects your life and why this legislature is important to you.
Every state will benefit by having legislation for Turner Syndrome Awareness. It may take time and some effort, but imagine a greater awareness and support for Turner Syndrome in your home state. First you must find a legislature who wants to give voice to Turner Syndrome. You will do this by sending emails to state legislatures, phoning, or visiting their offices as needed. Always send a followup thank you letter for their time and support. Once a bill is drafted it must post and pass in both houses - the senate and assembly - and then be approved by the top legislator and later be signed into law by the sitting Governor. In NJ it took 3 years and the persistance of our top advoate, Kym Hall, to help get it through. Kym can be a wonderful resource, should you need assistance. khall@tsfusa.org
Here are some steps to help you get started:
1). Find your state legislatures and find if there is a legislative (law) bill declaring February as Turner Syndrome Awareness Month. If so, clap loudly!! If not, become familiar with the name and how to email, phone or meet with legislatures. Start with those in your district. Then, proceed to step two.
2). Open the attached document for you to personalize, save, print, and email. Enter your contact information, your connection to TS (mother) and your state. Save this document. Write an intro letter asking your state legislatures to support your efforts for this legislation.
Sample legislation form
3). Find other advocates to help you. Provide them with the form letter and share these simple instructions.
Camille, we want you to take action and succeed in all you do. We are here to help you in any way. Feel free to call or email.
If we could do it, so can you! Keep us posted!
Template: Sample letter
If you have any questions, contact advocacy@tsfusa.org
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Talking Points:
The Turner Syndrome Foundation has created a tool to support your advocacy efforts. The Short and Sweet Talking Points will help you learn to speak about TS. It is meant to be an introductory guide to help you get the conversation started. Talking Points Guide
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