Our first Ectodermal Dysplasias Advocacy Day on Capitol Hill was an extraordinary moment in the history of the National Foundation for Ectodermal Dysplasias (NFED).  We took 175 people with us on July 19 and stormed Capitol Hill on a mission to educate our Congress about ectodermal dysplasias. Our families didn’t let scorching temps and long walks stop them from meeting with more than 145 offices of the House of Representatives and Senate.

Our Family-Driven Advocacy Committee had worked hard for years to plan this big day. Yet, we could have not anticipated the electricity in the air nor the passion in our families. As we gathered on the front steps of the Capitol for a photo, you could sense the magic of the day. Our families were determined to share their story and advocate for change.

A Senator in Our Corner

Senator Tammy Baldwin (second from right) visited with the Abbott family from Wisconsin.

After a light breakfast on Capitol Hill, Senator Tammy Baldwin from Wisconsin inspired us with her opening remarks. She explained to our families the importance of their meetings with their legislators.

Through previous meetings, Senator Baldwin said she was inspired by Aidan Abbott, a 12-year-old advocate with ectodermal dysplasia, to introduce Senate Resolution 226. This resolution designates the week of July 17 through July 21, 2017, as “National Ectodermal Dysplasias Week” and supporting the goals and ideals of National Ectodermal Dysplasias Week to raise awareness and understanding of ectodermal dysplasias.

The room erupted into cheers! Here was someone who was willing to take that first step and help our families. Many of us were teary with gratitude.

Throughout the day, families were hopeful and excited to share stories and experiences. Families from a given state met with their legislators as a team. They explained the need for equal rights under the law. They explained that many states already have laws to cover dental care if someone knocks out their teeth. But, insurance companies typically deny benefits for missing teeth due to birth.

Later that day, Senator Baldwin tweeted, “Proud to help raise awareness for this rare disease and advocate for children like Aiden from Slinger.”

Additional Legislators Sign On

Congresswoman Jackie Speier met the Vora family from California.

One of the most exciting events of the day was when the Vora family connected with their California Congresswoman, Jackie Speier. She was inspired by Sean Vora, and his baby daughter, Soley, when he told his story of living with ectodermal dysplasias.

Congresswoman Speier’s office and Senator Baldwin’s office immediately went to work together. In less than 24 hours, they introduced House Resolution 464, designating the week of July 17 through July 21, 2017, as “National Ectodermal Dysplasias Week” and supporting the goals and ideals of National Ectodermal Dysplasias Week to raise awareness and understanding of ectodermal dysplasias, to the House floor.

Congresswoman Speier posted on Facebook the next day, “Yesterday I had the pleasure of meeting one of my tiniest constituents from San Mateo, Sóley Vora, who came in with her parents Sean and Lindsay Vora, her aunt Aubrey Vora, and her grandfather, Anil Vora. Sóley’s dad Sean has a congenital disorder called Ectodermal Dysplasias, a rare disease which affects many parts of the body such as defects in the hair, nails, sweat glands and teeth. Little Sóley has also inherited the disorder, but we don’t know the degree to which she’s affected yet.

Sean and Sóley’s story has inspired me to introduce House Resolution 464, along with my colleagues Senator Tammy Baldwin, Congressman Adam Schiff, Collin Peterson, and Rep. Ro Khanna designating this week as “National Ectodermal Dysplasias Week” to help praise awareness and understanding of this disorder.

I also look forward to continuing working with the National Foundation for Ectodermal Dysplasias to help enhance the quality of life for those like Sean & Sóley living with Ectodermal Dysplasias by expanding research, prevention and treatment. We must also advocate for affordable health coverage for those with Ectodermal Dysplasias who can expect to spend approximately $150,000 on dental care alone during their lifetime,” Speier said.

Senator Baldwin tweeted, “Excited to be working with @RepSpeier to introduce a bicameral resolution designating this week as National #EctodermalDysplasias Week!”

Feeling Victorious

This rapid development of a resolution in both the House and the Senate was awesome and more than we could have hoped for on our first Advocacy Day.

That evening, our families gathered to share their experiences with one another. Since then, we have had many legislators inquire about how they can help the ectodermal dysplasias community. We continue to have legislators co-sponsor House Resolution 464.

Through follow up emails, and after sharing his story during his initial visit on Advocacy Day, Karl Nelsen of Minnesota, has also inspired a Congressman from Minnesota to express interest in writing future legislation to help the ectodermal dysplasias community.

Our first Ectodermal Dysplasias Advocacy Day on Capitol Hill was an amazing success for our NFED family. We made that first step – leap! – by educating. Our Family-Driven Advocacy Committee is planning our next steps to capitalize on this momentum. We will continue to help our families advocate and change the future for all everyone with ectodermal dysplasias.

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