Next Steps

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.

Alabama

Morgan Rigsby

Alaska

Emily is holding her Civics Bee prizes, an award and a stuffed eagle.

Emily Brubaker
Brian Brubaker

Arizona
Charlotte Gould

Arkansas

California

Colorado
Sam Mueller

Sarah Hamilton

Connecticut

Ashley Turner

Delaware

Florida
Steph Heintz

Maxwell Cohen

Georgia

Teresa Bridges

Hawaii

Idaho

Illinois

Indiana

Iowa

Jenny Steele

Sarah Ward

Kansas

Luci Capo Rome

Kentucky

Louisiana

Maine

Maryland

Massachusetts

Jonathan Weil

Minnesota

Mississippi

Missouri

Christina Hartmeyer

Michigan

Montana

Nebraska

Nevada

New Hampshire

New Jersey

New Mexico
Cody Snell

New York

Kerri Fasulo

North Carolina

Mary Beth Miller

Corinne Altrichter

Ohio

Maxwell Cohen

Shelby Kimball

Oklahoma

Oregon

Rebekah Parrish

Pennsylvania

Rhode Island

South Carolina

South Dakota

Rachel Olugbenga

Tennessee

Texas

Brooke Peterson

Utah

Tiffiny Tyler

Vermont

Virginia

Kevin Koser

Washington

West Virginia

Wisconsin

Becky Abbott

Wyoming