By Kerri Fasulo

I advocate because I can. It may seem easier to sit back and complain but it’s unproductive. People with congenital anomalies need dental treatment for medical reasons. Teeth are not cosmetic.

I also advocate because I want my daughter, Nicole, to learn how to use her voice to create a positive change.

Nicole did a great job on Capitol Hill sharing her story and how she’s affected by ectodermal dysplasia. Together, we advocated for ELSA!

Last July, we traveled to Washington, D.C. to participate in the National Foundation for Ectodermal Dysplasias (NFED) Advocacy Day at Capitol Hill. We met with New York representatives and Nicole told her story in her own words. Not just for herself but for all people with congenital anomalies.

While most kids her age are traveling to various hot vacation spots, Nicole went to the nation’s capitol to make a difference for everyone with congenital anomalies. And her voice is making a difference! She gained Rep. John Faso’s (R-NY) support of the Ensuring Lasting Smiles Act (ELSA) as a co-sponsor. Unfortunately, we lost him as the result of the recent election.

As defeating as that might feel, it’s only temporary! We are going back into action-mode. Our work is far from over and we need all the help we can get.

You can join us in our journey. Call NFED today at 618-566-2020 so you can use your voice! WE CAN DO THIS!

– Kerri Fasulo is a guest blogger for the NFED. She is the mother to daughter Nicole, who is affected by ectodermal dysplasia, and an NFED advocacy state lead.

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4 comments on “Why I Advocate”

  1. 1
    Cookie Butcher on January 17, 2019

    Hi- i am not sure this is the place to put this but i am writing on behalf of a friend who’s child was born with Ectodemal Dysplasia and am asking for you to support this Bill for this rare condition to be passed. This child’s sweat glands never developed and he will never have teeth, amongs a few other issues.
    thank you for your time ready this.

    1. 2
      Becky Abbott on January 18, 2019

      Hello, thank you for reaching out and supporting the Ensuring Lasting Smiles Act. If you are interested in advocating for this legislation, please register as an advocate through the following link: After you register you will receive updates on our advocacy initiatives along with links to help you reach out to your legislators to ask them to support the Ensuring Lasting Smiles Act.

  2. 3
    Susan Ulrich on July 18, 2019

    How can I help? please contact me. Susan

    1. 4
      Jodi Edgar Reinhardt on July 23, 2019

      Hi, Susan. We would love to have you advocate for the Ensuring Lasting Smiles Act! First, we suggest you register as an advocate by filling out this form. From there, we will email you with opportunities to take action. You can email or call your legislators by using our advocacy tool found here: Thanks for your desire to help! ~ Jodi, NFED, Director, Marketing and Communications

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