Julie Claeys , her son and two men affected by ectodermal dysplasia advocate on Capitol Hill.

By Julie Claeys

While advocating on Capitol Hill to garner support for the Ensuring Lasting Smiles Act (ELSA), it is important to meet with legislators and staff in person. It’s also important to take with you the child or adult in your family who is affected by ectodermal dysplasia.

It’s essential that you personally tell your story of struggles with ectodermal dysplasia. You can teach each person listening about what you are asking them to do. You can connect personally with that legislator and/or staff member. Kids, like Latham in this video, seem to talk with ease about themselves. By our own personal experience, members of congress are very interested in their constituents, especially youth!

Every Voice Matters

Last summer, I advocated on the Hill with our 23-year-old son who is affected by ectodermal dysplasia. We were joined by two brothers who were also affected, similar in age, and also from Michigan. The three guys did most of the talking. They described their personal struggles with missing teeth from being affected by ectodermal dysplasia and additional manifestations from the condition. Listen as my son explains why he attended the Day on the Hill last year.

I talked about the insurance battles and being denied proper coverage, even though we have great insurance and are responsible for our deductibles. Everyone took on a role so that we could fully express the need to mandate a bill that ensures proper medical coverage.

Our Fearless Kids

While attending the two-day, 2018 National Foundation for Ectodermal Dysplasias (NFED) Advocacy Day on Capitol Hill, I met many NFED families with children. Many were quite small.  I met several 8 to 10-year-olds who could tell their story so well and with confidence!

Mary Fete, Virginia Higgins and son meet with an aide from Senator Claire McCaskill's office.
Virginia Higgins (second from left) brought her son with her to Washington D.C. to teach him how to speak up for himself and others.

I was also impressed with toddlers who took on the day and had fun showing off their smile of two teeth! Then, of course, there were professional teenagers, boys and girls who took to the podium and were quite impressive!

What an experience to advocate for one self. Priceless. I know everyone left an impression – and it needed to be in person. Washington has so much to experience. To be a part of history will never be forgotten!

Walker family meets with a Louisiana legislator.
Randi Walker traveled three days from Louisiana to Washington D.C. and brought three of her children with her. All are affected by ectodermal dysplasias. Together, they explained their challenges.

We look forward to attending the NFED’s 2019 Day on the Hill, July 16-17, and hope to see many kids proud to tell their story!

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