Join Us on Capitol Hill

July 19 approaches faster than ever and that means Ectodermal Dysplasias Advocacy Day is almost upon us. We are thrilled that more than 70 families affected by ectodermal dysplasias are joining us on Capitol Hill! You may be wondering what to say, where to go or what to expect.

To address these concerns, NFED volunteer Becky Abbott gave us a snapshot of Advocacy Day in a webinar with Beth Pond. Here she gives a rundown of all the events for the day and hashes out the details you need to know to have a great time while talking to your legislators.

Here is what Advocacy Day will look like for you.

Step 1: Training on July 18

Before you go to Capitol Hill on Wednesday July 19, we will have a training session the day before which will be held in the same place as Family Conference – the Westin Tysons Corner in Falls Church, Va. – and will go from 3:30 p.m. to 6 p.m. Here you will learn in detail everything you need to know about Capitol Hill and talking to your legislators about the fight for you and your family’s smiles.

Step 2: Getting to Capitol Hill

Since it is the middle of the summer, your trip to Capitol Hill is bound to be hot, hot, hot. You are going to need to wear light clothing that is still appropriate for your meeting. We suggest khakis or dress pants and skirts coupled with a light-fitted shirt. Tennis shoes and sneakers are encouraged! Capitol Hill has a  lot of walking and we don’t want any sore feet.

Once you’re dressed and ready to go in the morning, the NFED will provide bus transportation from the Westin Tysons Corner Hotel into the city. Parking is sparse in D.C. and we don’t want any families walking so far in the summer heat.  The bus will drop us off right at the front door, no travel needed.

Step 3: At Capitol Hill

While at Capitol Hill, the NFED will set up a light breakfast for all those attending before we proceed to a hospitality room provided to us by the capitol. The hospitality room will serve as our home base for all families and individuals talking to legislators throughout the day. Snacks and drinks will be available to you between the meetings.

You may have to walk between buildings if you are talking to both your senators and representatives. These buildings are fairly far apart, so you are in for a high step count to the day. If you or your family members have problems with the heat, don’t worry! There are tunnels between the buildings that you may use.

Step 4: Talking To Your Legislator

Now for the most important part: meeting your legislators. You don’t need to worry, the NFED will take care of setting up the meeting time and place. All you need to do is tell your story. These government officials want to hear what you have to say and are unfailingly polite. It is their job to represent your struggles on a national level, so tell them about your struggles and what it means to you that the insurance companies cover your medical care.

Once you tell your story, you will leave the legislator with a letter containing your personal story and an informational packet provided by the NFED on ectodermal dysplasia. Please have your personal letter with you before you come to Advocacy Day! You can find an example of these personal letters in our Advocacy Day Toolkit along with other tips on Advocacy Day.

Finally, before you leave, take a picture with your legislator. Post the picture to Facebook or Twitter using the hashtags #mysmile and #teetharenotcosmetic to promote Advocacy Day all around the country and world!

Step 5: Return Trip and Recap

At the end of the day, the buses will come back to take us to the hotel in Falls Church for a recap meeting of all the achievements we made during the day. Together, we will eat dinner while everyone shares their experiences with their legislators. We hope to hear wonderful things from all of you.


We hope Advocacy Day appears less intimidating now that you know exactly what you’ll be doing. We need your help to change the laws governing insurance companies and ensure you have medical coverage for your teeth. Only you can change the minds of our legislators. Tell your story on July 19 at Advocacy Day.

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