My Motto: Never Ever Give Up

October 10, 2023October 9, 2023 Category: Stories of Hope Posted by NFED

Hello, my name is Nicole.

I am 14 years old and just entered my freshman year of high school. I love boating, soccer and taking care of my mischievous English lab puppy, Carla.

 

When I was about two years old, my parents noticed that my teeth were coming in really late and in a triangular pointed form. Through genetic testing, we received a diagnosis of hypohidrotic ectodermal dysplasia (HED). My parents had never heard of HED so after a Google search, my mom discovered the National Foundation for Ectodermal Dysplasias (NFED).

My teeth and my sweat glands are the two primary traits that are affected. By connecting with the NFED, my parents were connected with amazing resources. For one, they shared all kinds of information to help me stay cool if I get hot. Additionally, they have many resources that helped us learn about different dental treatments that we were able to look into.

My First Conference 

My first NFED Family Conference was in 2017, in Washington, D.C. and I didn`t know what to expect. I never met anyone else with ectodermal dysplasia. As soon as I arrived, I saw so many people, of all ages with different variations of ectodermal dysplasia and it really made me realize, I’m not alone. In fact, the warm welcome I received from adults and kids alike made NFED feel like family.

I attended Kays’ Kids Camp, met kids my age and made so many friends. I happened to meet one of my best friends at the conference, Layla. Layla and I looked like twins and we had so much fun together. It’s so nice to know that I have family and the NFED. I look forward to attending each year, when our schedules permit. It’s really a special experience. 

After I went to my first conference, I knew I wanted to use my voice to help others. In the process, I met other families who talked about how they could not afford dental procedures because insurance would not approve any coverage. Hearing their stories made me think about how much of an impact using my voice would be – not only to help myself but to help others. 

Why I Advocate

The NFED hosts Advocacy Day on Capitol Hill to earn sponsors for a bill, the Ensuring Lasting Smiles Act (ELSA). That bill is written to help people with congenital anomalies receive health insurance coverage. The irony is that if I lost all of my teeth in a car accident, I would receive 100% coverage for a full set of dental implants. However, when my mom got me dentures when I was six years old, the claim was denied because I was not 65 or older. I want my legislators to understand that teeth are not cosmetic. They are the first step in the digestive system. Teeth also help with speech. I’ll also admit, having missing teeth can really affect one’s self-confidence which ultimately affects mental wellness. 

I’ve advocated for ELSA for five years and even got to watch the Bill pass on the floor of the U.S. House of Representatives in April, 2022 online. It was such a great victory to witness! Unfortunately, it didn’t pass in the U.S. Senate and then we lost many sponsors with an election that followed.

I’m Committed to Help Others

The NFED recently hosted an Advocacy Day on Capitol Hill in Washington, D.C. on September 18-19 and I was able to participate. Once again, I met with my NY legislators’ offices to discuss ELSA.

The purpose of this unique civic opportunity was to ask Members of Congress to become original co-sponsors when it’s reintroduced in the 118th Congress. We are working hard to garner strong bipartisan support for ELSA.

Our advocacy efforts don’t stop on Advocacy Day on Capitol Hill. I remain committed along with many other NFED advocates to gain original co-sponsors of ELSA.

My motto has always been, never EVER give up. That’s why I continue to advocate for ELSA. I hope you will join us. Anyone can be an advocate, a voice to help others. 

Become an Advocate

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