Youth advocate Aidan Abbott meets with Sen. Tammy Baldwin to discuss ELSA.

By Aidan Abbott

My name is Aidan Abbott. I am 14 years old, and I live in Slinger, Wisconsin with my mom, dad and brother Ryder. I am a basketball fanatic who plays basketball several times a week with the National Basketball Academy. My favorite team is the Milwaukee Bucks, and my favorite basketball player is Jaylen Morris.

I was born with x-linked hypohidrotic ectodermal dysplasia. I’m missing many of my teeth, have issues sweating and my skin is very sensitive. While living with ectodermal dysplasias has it challenges, it has led me to meet many wonderful families and friends. These friends and families are the reason I volunteer for the National Foundation for Ectodermal Dysplasias (NFED).

Aidan and Ryker courtside at a Bucks game.
Aidan and his brother, Ryder, love to attend Milwaukee Bucks games

What Advocacy Has Taught Me

While I am blessed to have some of my teeth, most of the kids whom I have met have only a few teeth or no teeth at all. Their families, like mine, struggle with insurance coverage to get the treatments they need. This is wrong, and our laws need to be changed so that everyone who is born with a congenital anomaly can get the treatments they need. I have made it my mission to share my story and travel to Washington, D.C. to visit and educate my legislators as many times as I can so they understand why the Ensuring Lasting Smiles Act is extremely important to our families.

Through my volunteering for the NFED, I have become an advocate not only for myself, but for other kids who cannot share their stories. They are either too young or can’t travel to D.C. to meet with their legislators. Through advocating, I have gained more confidence and now share my story with teachers, friends, classmates and anyone who will listen. I have also learned that most people have never heard of ectodermal dysplasias, and it’s important to raise awareness to let others know how they can help our families.

Aidan stands on the streets in Chinatown with his brother, Ryker.
Aidan and Ryder in Chinatown

Why I Volunteer

Volunteering for the NFED has given me not only the confidence to advocate and share my story, but also to advocate on behalf of other families. My favorite part of volunteering is traveling to Washington D.C. and meeting with Senator Baldwin and all the other legislators. I especially like going to meetings and spending the day with other families.

If you have time and want to help an organization that has supported me and many other kids with ectodermal dysplasias, consider volunteering for the NFED. It could change your life and the lives of many others.

(Aidan continues to be a tremendous NFED volunteer. We are glad to have him as we continue our journey with the Ensuring Lasting Smiles Act. You can join Aidan and the rest of the NFED family by registering as an advocate with us below.)

Register as an Advocate

Leave a Reply

Your email address will not be published. Required fields are marked *