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
Brian Brubaker
Arizona
Charlotte Gould
Arkansas
California
Emylee Cadiz
Colorado
Sarah Hamilton
Connecticut
Erin Sheedy
Delaware
Florida
Steph Heintz
Maxwell Cohen
Georgia
Teresa Bridges
Hawaii
Idaho
Illinois
Halle Hofman
Indiana
Iowa
Sarah Ward
Kansas
Luci Capo Rome
Monica Rein-Moore
Selena Marshall
Kentucky
Louisiana
Maine
Maryland
Tara Sugiyama Potashnik
Massachusetts
Nishant D’Souza
Minnesota
Mississippi
Missouri
Michigan
Julie Claeys
Montana
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
Mary Beth Miller
Corinne Altrichter
Suzanne Santomieri
Craig M Savage
Ohio
Maxwell Cohen
Shelby Kimball
Ana Mercado
Ethan Richlak
Oklahoma
Oregon
Rebekah Parrish
Pennsylvania
Suzanne Santomieri
Rhode Island
South Carolina
South Dakota
Rachel Olugbenga
Tennessee
Texas
Brooke Peterson
Randi Walker
Srijith Kambala
Utah
Tiffiny Tyler
Vermont
Lucia Thomsen
Virginia
Washington
Marly Eugenio
West Virginia
Wisconsin
Amy Rosplochowski
Wyoming