Hello, ELSA Advocates and Supporters,

It’s been awhile since we shared an update on the status of the Ensuring Lasting Smiles Act (ELSA), and many of you have been reaching out to us, asking for a status update. It may seem like ELSA has stalled in the 118th Congress. However, we are taking a different approach out of necessity to work behind the scenes to garner as much support for ELSA as possible before reintroduction.

From the start, the National Foundation for Ectodermal Dysplasias (NFED) has taken the lead on the monumental task of getting the ELSA signed into law. The NFED’s leadership team, including the Board of Directors, has allocated significant resources to this effort and continues to provide unwavering support.

We, along with NFED Executive Director Mary Fete and countless advocates, have cultivated lasting relationships with hundreds of Congressional offices and have received feedback and praise that our mindful, grassroots advocacy is the only reason this health care bill has remained bipartisan throughout our advocacy initiative’s journey.

Since ELSA has an inconceivable amount of potential to create positive outcomes within patient and professional communities, the NFED has remained vigilant in maintaining our thoughtful and powerful relationships with key legislative offices to not only protect the integrity of the final bill, but to also do what’s best for communities that will benefit from ELSA.

Following Our Bill Leads

Passing federal legislation is a lengthy process that does not happen overnight. Thousands of bills are introduced each year, and only a small percentage of them make it to the President’s desk to be signed into law. The 118th Congress has proven particularly difficult. Only 49 bills have been signed into law so far.

The Senator stands in a conference room wearing a peach blazer over a white shirt and black pants. She is surrounded by teenagers and children who are all wearing matching ELSA t-shirts. The U.S. flag is in the background.
We are grateful to Senator Tammy Baldwin for her relentless support of ELSA.

Our advocacy team continues to work behind the scenes with our dedicated bill leads: Senator Tammy Baldwin (D-WI), Senator Joni Ernst (R-IA), Congresswoman Anna Eshoo (D-CA-16), and Congressman Drew Ferguson (R-GA-03). Their staffs have been working tirelessly to ensure that proper negotiations are taking place to move ELSA forward in the 118th Congress. We are following their lead and allowing them to be strategic and use their expertise to find and pursue the best path forward for ELSA.

We understand that many of you are tired and frustrated. We are, too. But we are committed to advocating and sharing our stories until ELSA becomes law.

To ensure we protect our community and their needs, it’s up to the NFED, ELSA advocates and supporters to stay strong, clear-minded, and finish what we started.

We ask that you continue to Stand Together with us to ensure ELSA becomes law.

Becky M. Abbott & Kevin Koser
NFED Family Advocacy Co-Chairs

2 comments on “Get the Latest News on the Ensuring Lasting Smiles Act”

  1. 1
    Dwayne Simpson on May 10, 2024

    I’m curious how many senators and representatives you have helping to push things with ELSA. If I go off of this blog post, it seems you only have four. I bet if you could get more senators and congresspeople to advocate, it would be easier to be recognized. This is a matter of national health and it seems to me that surely you should be able to get more politicians on your side.

    1. 2
      Becky M. Abbott, NFED Director, Treatment and Reaearch Advocacy on May 14, 2024

      Hi Dwayne. Great question.
      ELSA advocates and supporters have been able to garner the support of hundreds of Members of Congress to help move the Ensuring Lasting Smiles Act (ELSA) through Congress. We’re grateful for the bicameral, bipartisan support that this life-changing bill has garnered.
      -Becky M. Abbott, MPH
      National Foundation for Ectodermal Dysplasias
      Director, Treatment and Research Advocacy

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