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

Alaska

Emily Brubaker
Brian Brubaker
Arizona
Charlotte Gould
Arkansas
California
Colorado
Sam Mueller

Sarah Hamilton
Connecticut

Delaware
Florida
Steph Heintz

Maxwell Cohen
Georgia

Teresa Bridges
Hawaii
Idaho
Illinois
Indiana
Iowa


Sarah Ward
Kansas

Luci Capo Rome
Kentucky
Louisiana
Maine
Maryland
Massachusetts

Minnesota
Mississippi
Missouri

Michigan
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
Cody Snell
New York

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

Washington
West Virginia
Wisconsin

Wyoming