7 Reasons Why Youths Should Advocate for ELSA

January 13, 2026January 13, 2026 Category: Advocacy Posted by Jodi Edgar Reinhardt

Youth advocates for the Ensuring Lasting Smile Act (ELSA) have been critical in garnering legislators’ support over the years. Children and teens have powerful reasons to speak up and their voices truly matter.

Why Advocacy from Young People is So Important

It directly affects kids and teens.

ELSA helps ensure insurance covers medically necessary dental care for conditions like ectodermal dysplasias, cleft lip and palate, and other congenital conditions. These needs start in childhood.

Dental care is health care.

Teeth affect eating, speaking, growth, and overall health, not just appearance. Kids and teens can help lawmakers understand that dental treatment isn’t simply “cosmetic,” it’s essential.

Four ELSA youth advocates wearing matching blue tshirts sit around a conference table of a legislator's office in Washington D.C. Three have pieces of paper in front of them. There's a book cabinet in back and photos hanging on the wall. There's a member of the staff sitting center smiling as she listens to one of the girls tell her story. — *Several kids shared their story with legislative offices at our 2025 Hill Day*

Young voices are powerful and persuasive.

Lawmakers often listen closely to children and teens who share their real-life experiences. A young person’s story can be more impactful than statistics alone. We know from our experience that many legislators have co-sponsored ELSA after talking to a child or teen and being inspired!

It helps reduce pain and bullying.

Without proper dental care, kids may face challenges teasing at school if they are missing teeth or have teeth that are shaped differently. Advocating for ELSA is advocating for dignity and confidence.

It promotes fairness.

Medical treatments are typically covered by insurance, but dental treatments for medical conditions often aren’t. Kids and teens can stand up for equal coverage.

It builds leadership and advocacy skills.

Speaking up teaches confidence, communication, and civic engagement. All of these are skills that last a lifetime. Emily, an ELSA advocate who also won a National Civics Bee, is a good example.

It helps future generations.

Even if a teen is finishing treatment now, passing ELSA helps younger kids and families who will face the same challenges later. Their treatment needs are life long so it will also help them in the future.

Their Stories Will Inspire You

At our last Advocacy Day on Capitol Hill in November, 26% of our advocates were children and teens! We asked three of them to share the story they told their legislators. Here they are.

Brody’s Story

Brody is wearing a blue t-shirt and standing in front of a fireplace. There are decorations on the mantel. — *Brody and his dad are affected by a WNT10A-related condition that affects their teeth.*

My name is Brody, and I am nine years old. I have a condition called ectodermal dysplasia. It means that I am missing 12 of my adult teeth. Sometimes this makes life really hard for me.

I worry a lot about my future. I get scared that when I lose my baby teeth, I won’t be able to eat the foods I love or even talk the same way. When other kids in my class lose their teeth, I feel anxious and sad because I know mine may not grow back. I also have trouble eating some foods because my teeth aren’t strong enough.

Five advocates in their ELSA t-shirts stand with a legislative office staffer outside the office. One is a youth advocate. There's a US flag and two plaques in the background. — *Brody (center) joined his mom, Erin, and dad, Greg, at the 2025 Hill Day to meet with legislators from Pennsylvania.*

My family and I joined the National Foundation for Ectodermal Dysplasias (NFED) to help pass ELSA. This bill would help kids like me get the dental care we need covered by insurance so we can smile, eat, and feel confident like everyone else.

Please help make this bill a law so that kids like me don’t have to be scared about our smiles or our future.

Thank you for listening to my story.

Carter’s Story

The parents and two children stand in a parking lot in Washington D.C. with the U.S. Capitol Building in the background. There are cars parked in the back as well as trees lining the street. — *Carter (second from left) traveled to advocate in D.C. with his mom, Morgan; sister, Mary Lyle; and dad, Casey.*

My name is Carter. I am someone affected by hypohidrotic ectodermal dysplasia and advocate with the NFED.

There are many reasons why I want legislators to pass this important bill. One of the main reasons is that this condition affects my teeth, which sometimes causes bullying at school for the shape of my teeth, my speech, as well as having missing teeth.

Having ectodermal dysplasia is a challenge, especially in Alabama during the summer because my sweat glands did not form correctly. While I can sweat, it is abnormal which can make overheating an issue. In the past, getting bullied on the bus and at school made me incredibly sad.

The main reason I want this bill to be passed is so that insurance will not be able to find loopholes to cover the medical bills that come with this disease. Without insurance coverage, the time, effort and money that must be put into the medical bills of my disease are extreme. This coverage would ensure I get the treatment I need.

Some people probably think that being affected by this is all bad. However, I have had chances to learn other individual’s stories, make friends, and go on meaningful advocacy adventures in D.C.!

Chloe’s Story

A mom and her four children stand in a room in a room in a Congressional building. They have their arms around each other. — *Chloe (second from right) and her family have been supporting ELSA since 2016. Here she is with twin, Hattie; brother, Finley; mother, Randi; and her brother, Weston.*

Hello! My name is Chloe. I am 12 years old and one of the many children that suffer from the effects of congenital anomalies. Specifically, me and my siblings have hypohidrotic ectodermal dysplasia which affects our skin, hair, teeth, nails, and sweat glands.

Here’s Chloe at the NFED Advocacy Day on Capitol Hill in 2018.

I have been advocating for ELSA with my family for the last nine years. ELSA is legislation that would close the loophole that insurance companies use to deny and delay claims for medically necessary care and procedures. Then, our private insurance would cover our needs as it was designed to do.

One of my brothers, Weston, is missing all but two teeth and my other brother, Finley, is missing all of his teeth. My twin sister, Hattie, and I are each missing a few teeth. I don’t have a lot of missing teeth compared to my brothers, but I am still insecure and struggle eating certain foods and speaking. I am hoping I will get implants, but I don’t want my family paying so much out of pocket when our private insurance should cover it.

A mom and her three children are wearing match lime t-shirts and sitting across a conference table from a legislative staffer. There's a TV on in the background. — *In 2018, my mom shared how HED affects five people in our family, including me, with our U.S. Representative’s staff member.*

My oldest brother has already gotten his implants and has also had several sets of dentures. My other brother has had several dentures, too. Their care and procedures and surgeries have cost our family well over $120,000 out of pocket so far. If ELSA had passed before they started all of this, my family’s insurance would have covered those costs.

Will you help?

There is already a law that says insurance has to cover these procedures and surgeries, but insurance companies find a loophole and it leaves families like mine forced to pay out of pocket or forgo treatment, causing further medical problems.

Please make the right decision today and support me and my efforts to get ELSA passed into law. I hope you will choose to cosponsor this bill and support me and my family and so many others. Thank you.

Take Action

Have these youth inspired you? Here are your next steps to start advocating.

Talk to your child or teen and see if they would like to advocate for ELSA with you.
Together, learn the basics. Read about ELSA and why it matters.
Register as an advocate with the NFED.
Write your short story. Think about how dental care affects you or someone you love. Check out our advocacy resources for help.
Use your voice. You can write your members of Congress using NFED’s advocacy tool. Include your story.
Participate in NFED advocacy days and campaigns. When you register as an advocate, you will receive emails with opportunities to take action.

When children and teens advocate for ESLA, they’re not just sharing their stories. They are helping change the system for the better!

Have a question or comment? Contact us.