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.

Next Steps

Now that you have contacted your legislator, we have lots of great information and 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. We 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. You can also 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.

Alaska
Melissa Marconi Wentzel

Arizona
Cynthia Howard

California
Evelyn Olive

Connecticut
Kimberly Henderson

Colorado
Sam Gansebom

Florida
Lauren Rizzo

Georgia
Erin Bowling, Ann Newlin

Idaho
Cheryl Kingsford

Illinois
Jim Miedema, Beth Orchard

Indiana
Laura Steyer

Iowa
Jenny Steele

Kansas
Da’Nella Anderson, Lynn Keach

Kentucky
Kim Brumfield

Louisiana
Kristin Robins, Randi Walker

Maryland
Christine Gottschalk, Jordan Kahn

Massachusetts
Beth Pond, Jonathan Weil

Michigan
Julie Claeys

Minnesota
Karl Nelsen

Mississippi
Chastity Vermilyea

Nebraska
Karly Black


New Hampshire
Sarah Cheever

New Jersey
Deirdre Fitzpatrick

New Mexico
Cody Snell

New York
Victoria Sharp-Kaufman, Kerri Fasulo

North Carolina
Kara Roberts

North Dakota
Tyrina Townsend

Ohio
Debbie Dillon

Oklahoma
Kristalyn Pittman, Franki Sebock

Oregon
Jack Kriz

Pennsylvania
Dawn Oldenski

Rhode Island
Laura Locke

South Carolina
Jamie Duke

Tennessee
Laura Ash

Texas
Sarah Miedema

Utah
Tracy Beals

Virginia
Kevin Koser, Christine Gottschalk

Washington
Misty Coker

West Virginia
Shannon Smith

Wisconsin
Becky Abbott