June 24, 2020 was an extraordinary day for the Ensuring Lasting Smiles Act (ELSA). It was our largest turnout ever!

More than 500 advocates from 49 states met with their legislators by phone to share their story and ask them to support ELSA. An additional 100 advocates sent emails to 75 legislators.

While we were disappointed to not be able to meet in person in Washington D.C., meeting virtually enabled more advocates than ever before to participate in our annual Advocacy Day on Capitol Hill. It was incredible!

Besides families affected by ectodermal dysplasias, advocates with other congenital anomalies and several medical professionals participated as well.

Executive Director Mary Fete said she is beyond pleased at how well the day went.

Even virtually, you could feel the incredible energy of the day, on our calls, on social media and in our wrap-up meeting. I was so proud of all of our advocates. Families bravely told their stories of how tough it is to not have a full set of teeth and the toll it can take medically, emotionally and financially. Their willingness to be vulnerable and speak up for change is why this bill has made such significant progress in just a few years.

Watch this video to see many of the amazing advocates who are fighting for ELSA.

Our Determined Bill Leads

Since Advocacy Day, five legislators from the House of Representatives and two from the Senate have signed on to co-sponsor  ELSA! This raises our totals to 306 representatives and 42 senators. We are hopeful to add more co-sponsors in both the U.S. House of Representatives and the U.S. Senate soon.

Graphic of the U.S. Capitol Building. Text reads how many co-sponsors in the house and the senate.

We are proud and grateful for our four bill leads:  Sen. Tammy Baldwin (D-WI), Sen. Joni Ernst (R-IA), Rep. Collin Peterson (D-MN) and Rep. Denver Riggleman (R-VA). Each shared a special video message for Hill Day. We can’t thank them enough for their unwavering support and leadership! They, like all of us, are determined to get this bill across the finish line.

Sen. Tammy Baldwin (D-WI)
Sen. Joni Ernst (R-IA)
Rep. Collin Peterson (D-MN)
Rep. Denver Riggleman (R-VA)

What Advocates Had to Say

This year’s Advocacy Day drew hundreds of new families who had never advocated before. They attended our training and wrote and practiced their personal story. Many led their tele-meetings as facilitators. Their passion was incredibly moving!

Hill Day advocates met on Zoom to share their experiences and talk about what it was like to talk to Congress!

Patrick Long of Washington was a first-timer for Hill Day.

“Advocacy Day was great for two reasons, first because being on the west coast we got a chance to participate directly, and two because we actually got to speak with all of our Senators’ and one Representative’s staff, one of whom was on the staff of the key Senate committee critical to the bill,” Patrick said.

“It was also fantastically well organized by NFED and their Washington partner – all we had to do was be there, tell our stories and ask for their help. And finally, the welcome and commitments to support the bill we received gave us new hope. A wonderful day. Thanks NFED!”

What’s Next

Six months remain to get ELSA passed. In the House, two of the three House committees to which ELSA is assigned held hearings earlier this year. Rep. Peterson added the bill to the U.S House of Representatives Consensus Calendar. If ELSA remains on the calendar, it could force a vote on the floor or possibly bypass committees, which would be great news.

In the Senate, we need to secure additional co-sponsors before the H.E.L.P. Committee will review the bill.

This is where you come in!

“It’s critical that advocates continue to reach out to their legislators whether it’s by email or by phone,” Mary said. “We encourage everyone who advocated on Hill Day to keep following-up. Give bill updates. Talk about how your family members with ectodermal dysplasias are doing with treatment and explain how ELSA would help your family. Keep building those relationships. With only six months to get this bill passed, we have no time to lose!”

For new advocates, we make emailing your legislators super easy. You can fill a form on our website and the advocacy tool sends the email to your specific legislators.

Tell Congress to Support ELSA

Meet With Your Legislators in August

The NFED is participating in another virtual advocacy day sponsored by the Rare Disease Legislative Advocates (RDLA) called “Rare Across America.” Members of Congress spend the month of August working in their home states and districts.

RDLA will organize and schedule meetings for you with your members of Congress or their staff. Your meetings will take place in the Member’s district office while Congress is in recess from August 3 – September 7. Similar to NFED’s Advocacy Day, RDLA will provide training and resource materials.  

To participate, you must register by Friday, July 3.

Register for Rare Across America

Next Six Months Are Critical

ELSA’s ticking clock is getting louder as we head into the final six months of this session of Congress. We invite every NFED family, whether you have any advocacy experience or not, to please take action and contact your legislators.

If we don’t get this passed into law, we will have to start completely over in 2021 with ZERO co-sponsors in the House and Senate. It’s also an election year so there’s a chance many of our current Congressional supports would not be re-elected.

We are confident that we can succeed! Our vision for the future is one where no family in the United States has to ever fight their insurance company again to pay for their dental care. You deserve dental care to have teeth. We’re going to fight for that.

But, we absolutely need your help. Please, advocate.

Let’s get ELSA passed!

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