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.

Family-Driven Advocacy

Advocating for such a law is going to be a marathon, not a sprint. Our advocacy efforts are family-driven. We will be asking for your help at different stages of the process…like now! We are running a new campaign, Autumn is for Advocacy, through November 30th. We ask all families – including you – to schedule appointments to meet with your legislators in their local district offices. We need a senator or representative to draft a bill as the next step towards getting a law.

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.

Congresswoman Jackie Speier (center) with the Vora family.

During the first Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19, Rep. Jackie Speier of California also introduced House Resolution 464 (H.Res.464) highlighting key information about ectodermal dysplasias.

Take Action at Home

Step 1: Share Your Story

Use our Advocacy Tool Kit which will help you write your unique and important story that you can share with your legislators. Please include a picture of your child, yourself and/or family that can be shared with your legislators as well.

 Read Advocacy Tool Kit 

Step 2: Contact Your Legislators

Now that we have Sen. Tammy Baldwin in our corner, we need you to contact your legislators, educate them and ask for their support. This is an important step in our process to garner support for federal legislation. Everyone needs to participate! Share with your family and ask them to send this letter to their legislators as well. There are strength in numbers and the more letters that are received the more our voices will be heard!

How to Find the Contact Information for Your Legislators

Contact your legislator by mail or email. If you don’t know who your legislators are (you have two senators and one representative), do the following:

U.S. Senate

  • Go to
  • Top left, click on senators.
  • Top left, choose your state and click. You will see your two U.S. senators for your state.

U.S. House of Representatives

  • Go to
  • Top right says FIND YOUR REPRESENTATIVE. Enter your zip code and click GO.
  • The name of your U.S. Representative for your state district will appear at top left side of page.

Download This Sample Letter for Senators

Download This Sample Letter for Representatives

Step 3: Write Senator Tammy Baldwin

For your final step, please send a letter to Sen. Tammy Baldwin. We provide the following letter you can use.

Download This Sample Letter for Sen. Baldwin 

If you have any questions, email Kelley at the NFED or call her at 618-566-6873.

Step 4: Watch Webinar

Watch this webinar given by Becky Abbott, Family-Driven Advocacy Committee Co-Chair, to learn in greater detail about our advocacy efforts and what you can do to get involved. If you don’t have time to watch the webinar, view and read the slide deck used in the webinar.

Watch Webinar