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 Leads
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
Erin Bowling, Ann Newlin
Jim Miedema, Beth Orchard
Da’Nella Anderson, Lynn Keach
Christine Gottschalk, Jordan Kahn
Beth Pond, Jonathan Weil
Victoria Sharp-Kaufman, Kerri Fasulo
Kristalyn Pittman, Franki Sebock
Kevin Koser, Christine Gottschalk