How to Use the Advocacy Tool
Watch this tutorial video to learn how to fill out the advocacy tool above to contact your members of Congress about the Ensuring Lasting Smiles Act.
Now that you have contacted your legislator, we have lots of great information on how to meet your legislators close to home. Peruse our tips for preparing for your advocacy meeting. We walk you through what to expect, items to take along and action to take afterwards.
You will also want to check out our advocacy resources, including our state leads and ELSA Advocates Facebook Group. We also have sample personal stories you can read. These stories will help you in preparing to share your own story with ectodermal dysplasia, whether that’s in an email, on a phone call or in person. And don’t forget to download our advocacy flyer, which you can use as a leave behind at your legislator meeting.
Serve as a State Lead
We have volunteers serving as advocacy leads in the following states. If you would like to be a state lead or want to contact the lead in your state, email Becky Abbott, co-chair of our Family-Driven Advocacy Committee.
Melissa Marconi Wentzel
Evelyn Olive, Amy Vandenberg
Jim Miedema, Beth Orchard
Da’Nella Anderson, Lynn Keach
Kristin Robins, Randi Walker
Christine Gottschalk, Jordan Kahn
Victoria Sharp-Kaufman, Kerri Fasulo
Kristalyn Pittman, Franki Sebock
Kevin Koser, Christine Gottschalk