By Alli Steele

When I first started advocating, I had some knowledge of who legislators are and how our government system works. It was a little intimidating to think about meeting and trying to influence the people who run our government. Even though I was unsure how to interact with our leaders, I had to share my story and the story of others who live with ectodermal dysplasias.

Our life experiences are unique and likely different than other stories they may have heard. In fact, we may be the first ones to introduce the words ectodermal dysplasia.

How to Start

  1. Find out who your Federal Representatives and Senators are
  2. Contact their state and federal offices
  3. Follow up timely
  4. Prepare for your advocacy meeting
  5. Meet in person
  6. Send a thank you
  7. Keep in regular contact

When you stay in contact with your representative or senator you make a difference. It is important that when you meet with staff or the legislator themselves that you share your story (include the good and the not so good) and ask them to support the Ensuring Lasting Smiles Act (ELSA) (S.560/H.R.1379). Some legislators will ask follow up questions. Answering those can improve our case and build a strong relationship.

Advocating doesn’t end when you leave Capitol Hill. The airport is fair game!

How to Stay in Touch

Some people ask, “How do you build a relationship with your legislators?” Well, you stay in contact. Keep the chain of emails going. Stay in communication. If you are worried about what to include in the emails, don’t.

I have met with Sen. Joni Ernst (R-IA) several times.

You should include the following: tell them more of your story, how ELSA will impact you and others with ectodermal dysplasia, thanks for spending the time that they have with you and for how much you appreciate their support, and give them updates on new information and progress in the bill {insert hyperlink to Bill to show progress}. With constant communication comes understanding that will lead to progress.

My family is excited to hear about your experiences. The NFED has some great social media communication on ELSA on Facebook and Twitter. It is a great way for our community to share successes and ideas.

The ELSA bills in the House and the Senate will only be successful if we stick together and all work to make a positive difference for our medically necessary dental needs.

If you still feel uncomfortable in reaching out to your legislators, let me share that I started advocating when I was 11 years old.

You can do this. We can do this…together!


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