Advocating for Federal Legislation

The biggest complaint we hear from families is that their health insurance company or their employer-sponsored self-insured health plan has denied benefits for necessary medical care and treatment regarding teeth. Our mission is to put an end to this.

Our goal is clear. We want the federal government to pass a law guaranteeing the payment of health insurance benefits for necessary medical care and treatment due to congenital anomaly.

This law will provide coverage from the moment of birth and will consider congenital anomalies and birth abnormalities as an injury or sickness and cover the functional repair or restoration of any body part, including the teeth and the bone that holds them, when necessary to achieve normal bodily function.

Advocating for such a law is going to be a marathon, not a sprint. Our advocacy efforts are family-driven. We will need your help at different stages of the process.

Register as an Advocate

Your first step to advocate for ectodermal dysplasias is easy – and important. Let us know that you are ready to raise your voice for our community by filling out a short form. By doing so, we will email you with advocacy opportunities for you.

SIGN UP TO BE AN ADVOCATE [\button]

Ectodermal Dysplasias Advocacy Day on Capitol Hill

We invite the ectodermal dysplasias community to join us on Wednesday, July 18th for our second Ectodermal Dysplasias Advocacy Day on Capitol Hill in Washington, D.C.

[button] Learn more and Sign Up for Advocacy Day 

Allies In Our Corner

Senator Baldwin

We are excited that Sen. Tammy Baldwin from Wisconsin heard us and cared enough to take action. She understands our challenges, struggling with insurance coverage for medically necessary dental treatment.

Sen. Baldwin has raised awareness for ectodermal dysplasias on Capitol Hill and introduced Senate Resolution 226 (S.Res.226) highlighting key information about ectodermal dysplasias. This resolution will educate our legislators. You can check here on whether or not your senator has co-sponsored S.Res.226.

Congresswoman Jackie Speier (center) with the Vora family.

During the first Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19, 2017, Rep. Jackie Speier of California also introduced House Resolution 464 (H.Res.464) highlighting key information about ectodermal dysplasias. You can check here to see if your representative has co-sponsored H.Res.464.

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.

Alaska
Melissa Marconi Wentzel

Arizona
Cynthia Howard

California
Evelyn Olive

Connecticut
Kimberly Henderson

Colorado
Sam Ganseborn

Florida
Lauren Rizzo

Georgia
Erin Bowling, Ann Newlin

Idaho
Cheryl Kingsford

Illinois
Jim Miedema, Beth Orchard

Indiana
Laura Zemen

Iowa
Jenny Steele

Kansas
Da’Nella Anderson, Lynn Keach

Kentucky
Kim Brumfield

Maryland
Christine Gottschalk, Jordan Kahn

Massachusetts
Beth Pond, Jonathan Weil

Michigan
Julie Claeys

Minnesota
Karl Nelsen

Nebraska
Karly Black


New Hampshire
Sarah Cheever

New Mexico
Cody Snell

New York
Victoria Sharp-Kaufman, Kerri Fasulo

North Carolina
Kara Roberts

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