By Aidan Abbott

The past few years, I have had several opportunities to advocate for ectodermal dysplasias on Capitol Hill in Washington D.C. and at my State Capitol. Here are my top ten reasons why it’s important for kids/youth to advocate.

  1. Washington D.C. and Capitol Hill are awesome places to visit. The buildings are very old and it’s interesting to learn all the important events that happened throughout history in the buildings that you visit.
  2. The legislative staff are very nice and like to hear your story. They usually meet and listen to adults, and they don’t get to talk to kids often. They mention that it’s nice to hear the opinions of young people and get their point of view on important topics.
  3. You get to share your story in your own words. Most legislators and their staff have never heard of ectodermal dysplasias and don’t understand the issues that kids face every day. It gives me the confidence to be able to tell my story and hope that I am making a difference and changing lives.
  4. Most of the legislative offices have interesting items. One of the offices I visited last year even had a dog. Each office also has different snacks and give away items that are made in their state. When I visit the Wisconsin offices, they usually have craisins, beef jerky, and chips – all products proudly made in Wisconsin. It’s a nice break to have a quick snack in between meetings. I even had a root beer in Speaker Paul Ryan’s chambers, when I met with him.
  5. It’s fun to spend the day with other kids and families from your state, who are advocating for the same issue. During the last NFED Ectodermal Dysplasias Advocacy Day on Capitol Hill, I was able to spend the day with my friend, Tyler, and we advocated together.
  6. It’s a once in a lifetime opportunity. Most kids don’t get to meet their legislators or travel to Capitol Hill or their state capitol.
  7. During your visit, you might meet or see celebrities and other notable representatives or senators, that you would only usually see on television. I have met actor Don Cheadle and the Ambassador to Serbia and saw Newt Gingrich, Speaker Paul Ryan and many other important politicians on Capitol Hill. It’s always a good idea to keep an eye out for important people roaming the halls of The Capitol.
  8. It’s a great time to spend with your family. Each time we visit Capitol Hill, we make it a family day. We take a tour of the buildings, visit different offices, have lunch in one of the many cafeterias and watch the legislative staff and lobbyists, as they rush through their day.
  9. After your visit to Capitol Hill, you can visit many of the national museums in Washington, D.C. Almost all the museums in D.C. are free to get in and within walking distance of each other. The Smithsonian is amazing and has something for everyone.
  10. Your advocacy makes a huge impact. Sharing your story can change the future and help the lives of not only yourself and your family, but many others.

I hope to see you all on our next visit to Capitol Hill with the National Foundation for Ectodermal Dysplasias (NFED) on July 18!

– Aidan Abbott is a guest blogger for the NFED. He’s 13 years old, lives in Slinger, Wi. and is affected by ectodermal dysplasia. We encourage parents to bring their children affected by ectodermal dysplasias to Ectodermal Dysplasias Advocacy Day on Capitol Hill this summer to help us advocate for a federal law that would provide health insurance benefits for ectodermal dysplasias. Register your family now.

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