By NFED Family-Driven Advocacy Committee

Families, do you realize the impact we made on Capitol Hill last month with our first Ectodermal Dysplasias Advocacy Day on Capitol Hill? It’s extraordinary to have not just a resolution introduced to the Senate but to have a matching one filed in the House of Representatives within 24 hours! And, these resolutions have bi-partisan support!

This success comes as a result of Advocacy Day when Senator Baldwin introduced Senate Resolution 226 (S.Res.226) and Congresswoman Jackie Speier from California introduced House Resolution 464 (H.Res.464). These resolutions designated the week of July 17 through July 21, 2017, as “National Ectodermal Dysplasias Week” and supported the goals and ideals of National Ectodermal Dysplasias Week to raise awareness and understanding of ectodermal dysplasias.

We now have bipartisan support from five co-sponsors for H.Res.464 – Rep. Adam B. Schiff (D-CA), Rep. Ro Khanna (D-CA), Rep. Collin C. Peterson (D-MN), Rep. Ryan A. Costello (R-PA), and Rep. James P. McGovern (D-MA).

“We need to do more to increase access to comprehensive coverage for this congenital disorder that includes the vital dental care services our families need. I look forward to continuing my work with you and the National Foundation for Ectodermal Dysplasias. Together we will make a difference in the lives of families and children affected by this rare disease. – Senator Baldwin

Our next step is to enlist a senator or congresswoman to draft a bill.  That will be the first of many in the complex legislative process of how a bill becomes a law.  But, we need you to act now to help us meet that goal.

We Need You To Take Action Now

We need you to contact your Senators, Congressmen, and Congresswomen. Ask them to co-sponsor these resolutions. Check back to see if more Representatives sign on to H.Res.464.

We still need co-sponsors for S.Res.226. Check back to see if more Senators sign on to the Resolution.

Autumn Is for Advocacy

Starting today through November 30th, we are running a new campaign, Autumn is for Advocacy. We ask that all families schedule appointments to meet with your legislators in their local district offices. Here’s what we need you to do:

  • Share your story
  • Ask your legislators to co-sponsor Senate Resolution 226 and House Resolution 464
  • Explain our need for federal legislation

We must take every opportunity we have to raise awareness for ectodermal dysplasias and educate our legislators about our struggles with insurance coverage.

Follow These Easy Steps to Take Action At Home

Step #1: Email letter to your legislators

Use the links below for letter templates that you can copy and paste. Add your Representatives’ and Senators’ names and contact information. There is also an area to add your personalized story. If you need help or ideas of what information to include in your personal story paragraph, there are sample letters in the Advocacy Toolkit.

Use This Sample Letter for Representatives Use This Sample Letter for Senators

Step #2: Contact your local legislative offices and schedule appointments

 Many legislators book their schedules far in advance. Please ask to meet with your legislator’s senior health policy staffer or aide if your legislator is unavailable.

How to find your legislators and their local offices:

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.

Step #3: Visit with your Senators and Representative. Share your story!

When you meet with your legislator, share your story and struggles with obtaining insurance coverage for your teeth and dental treatments. Share this message:

As a first step to raise awareness for ectodermal dysplasias, Senator Tammy Baldwin of Wisconsin on July 20, introduced Senate Resolution 226. Representative Jackie Speier of California introduced the same Resolution in The House, H.Res 464. As your constituent, we ask that you support the resolution.

We need your help and support to get a federal bill drafted, introduced and signed into law. The law will protect our families from health insurance denials for TEETH, when benefits should have been covered and paid.  Even now, states that have laws that cover congenital anomalies do not protect our family because teeth are not considered part of the body. 

Leave a copy of your letter with your contact information. They may need to follow up with you if they want to co-sponsor the resolutions, need additional information, or want to support our goal of federal legislation.

Step #4: Take a picture with your legislator and post to social media.

Ask your legislator if they will take a picture with you. Most legislators and staff are happy to accommodate this request. You can post to social media after your meeting, tag your legislator and thank them for taking the time to meet with you and your family. Use the hashtag #teetharenotcosmetic in your post.

Step #5: Send a follow-up email to your legislators.

Thank your legislators via email for meeting with you. Copy on these emails so the NFED is aware of your visits.

Step #6

Email us to tell us your success story. Include anything you learned from your meeting.

Will You Be a Leader in Your State?

Our Advocacy Committee is looking for families to serve as State Leads to help us keep families up-to-date on our advocacy efforts. If you are interested in learning more about this role or in signing up as a state lead, please contact Beth Pond.

We must keep the momentum going! Take action now!

6 comments on “Autumn is for Advocacy”

  1. 1
    Fazal Ghani on October 2, 2017

    I support the movement

    1. 2
      Jodi Edgar Reinhardt on October 4, 2017

      Thank you! We hope that you will help by taking action!

  2. 3
    Hannah Seals on October 4, 2017

    I support!

    1. 4
      Jodi Edgar Reinhardt on October 4, 2017

      Thank you! We hope that you are inspired to action and reach out to your legislators! – Jodi, NFED

  3. 5
    Barbara A Young on October 5, 2017

    I support this change, it seems obvious that this would & should be covered.

  4. 6
    Heather McIntosh on May 30, 2018

    I have contacted my Senators!

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