Even a U.S. government shut down couldn’t stop our Ensuring Lasting Smiles Act (ELSA) advocates! On Tuesday, November 4, 158 energetic advocates from across the country gathered in Washington, D.C. for our Advocacy Day on Capitol Hill. They came to tell their stories, meet with lawmakers, and push for a law that will make a real difference for families affected by ectodermal dysplasias and other congenital anomalies.
Quiet Halls, Loud Voices
Because the shutdown primarily affects the executive branch, the U.S. House of Representatives and the U.S. Senate remained open for legislative work. While the halls of Congress were quieter than years past, advocates successfully met with 131 legislative offices in 31 states. Our ELSA crew was easy to spot in our teal shirts as we made our way through Congressional buildings. Best of all, several legislators agreed to co-sponsor ELSA! This means ELSA now has bi-partisan support with 33 co-sponsors in the Senate and 96 in the House.
Because of the government shutdown, legislators were eager to meet with their constituents. While advocates often meet with staffers, this year, many got to actually meet with their senators or representative.
Persistence Pays Off
Christina, Peter and Henry met directly with Sen. Susan Collins (R-ME) who is a member of the U.S. Senate Committee on Health, Education, Labor and Pension (HELP). She was the first to co-sign on Hill Day after meeting with them! The HELP Committee is the Senate committee assigned to review ELSA and move it forward.
Henry, 12, said it felt great to leave Sen. Collin’s office and have a text minutes later that she had co-signed. His mom, Christine, agreed.
“It was really amazing leaving the constituent coffee to hear the staffer say, ‘Well, you heard her. She wants to co-sponsor,’” Christine said. “And then to see how fast they took action. It has been quite nice to develop a relationship with the staff and the senator over the years and it really has made a difference.”
And a huge shoutout to our Florida advocates for meeting with Sen. Rick Scott (R-FL) and garnering his support. For eight years, they have determinedly been sharing their stories. They never gave up and he’s finally an ELSA co-sponsor!
Making Connections
The Abbott and Steele families ended Hill Day meeting Chris, a legislative aide with the Senate Committee on Veterans’ Affairs. It turns out that Chris is affected by ectodermal dysplasia! He connected with an advocate last year in the hallway at NFED’s Day on the Hill. This year, he reached out to Becky Abbott, NFED’s Director, Research and Special Assigned Projects, and asked to meet. The families shared stories from their ectodermal dysplasia journeys and the need for ELSA! You never know the connections you can make when you raise awareness.
Why This Matters
The goal for the day was clear: advance ELSA. But Advocacy Day also serves another very important purpose. It empowers families to be their own best advocates. Sharing a personal story takes courage. When you speak with your legislator, whether in Washington, D.C. or back home, you’re practicing advocacy that you can use anywhere. We’re so proud of every participant for stepping into that role.
Working Together for A Stronger Impact
Passing ELSA won’t just help individuals with ectodermal dysplasias. It will help many people born with congenital anomalies gain access to medically-necessary care. That’s why the NFED welcomed several other organizations to our Hill Day:
Families affected by cleft lip & palate, craniofrontonasal dysplasia, craniofacial microsomia and oligodontia added their voices alongside ours. And it wasn’t just affected individuals and families showing up. We had support from physicians and dentists too:
- American Association for Dental, Oral and Craniofacial Research
- American Academy of Pediatric Dentistry
- American Society of Plastic Surgeons
- Lurie Children’s Hospital
Dr. Pedro Sanchez traveled cross country from Los Angeles where he’s a pediatric geneticist at Cedars-Sinai Medical Center. He’s passionate about advancing health equity.
“It was truly inspiring to stand alongside families, advocates, and colleagues in Washington, D.C., in support of the Ensuring Lasting Smiles Act,” Dr. Sanchez said. “I was especially proud to be there with my daughter, Karina Sanchez, who joined us from Penn State Berks. Together, we shared our stories and concerns as a unified community, putting real faces to this important issue. Our conversations with senators and representatives were a powerful reminder of what can be achieved when patients, clinicians, and policymakers work together to drive meaningful change for future generations.”
Grateful for our Bill Leads and Sponsors
We are very thankful to the ELSA bill leads who are working hard behind the scenes to secure support and bring the legislation to a vote:
- Sen. Tammy Baldwin (D-WI)
- Sen. Joni Ernst (R-IA)
- Rep. Neal Dunn (R-FL-08)
- Rep. Kim Schrier (D-WA-08)
One of the highlights of the day was Rep. Schrier, who is a pediatrician, speaking to our community to kick off Hill Day.
“I want you to know that what Ryder (ELSA advocate) said was true,” Rep Schreier said. “When you share your stories with us, they stick in our brains and they bring about action for ELSA. And I want you to know things take a long time here in Washington but your efforts will pay off. I want to thank you for coming, for advocating and for sharing your stories.”
We especially thank our sponsors for understanding the importance of Advocacy Day and giving their financial support: the Aniotzbehere family, Dr. Pedro Sanchez, Lyle and Meg Smith, Operation Smile, the American Academy of Pediatric Dentists and Smile Train.
Let’s Keep It Going
We can’t stop now. It’s up to all of us to keep the momentum going! If you are new to advocacy, here are your next steps:
- Check these House and Senate maps to see if your legislators are co-sponsoring ELSA.
- Use our easy advocacy tool to send a letter to your legislators. The letter is ready to go. Just add your personal story.
- Act quickly and consistently. The 119th Congress is where we must make this happen. The sooner ELSA passes, the sooner families can get the treatments and benefits they deserve.
If you attended Hill Day or already have a relationship with your legislator’s office, use these steps:
- Check these House and Senate maps to see if your legislators are co-sponsoring ELSA.
- Email the staffer or legislator directly to follow up, update them on ELSA’s progress and ask them to co-sponsor the bill and enlist their colleague’s support as well.
- Call your legislators directly to set up a meeting in their local office to share your story. Use this resource to help you prepare.
Let’s take Henry’s lead who says he advocates “to make things better for everyone!”
Thank you again to all our advocates, sponsors, partner organizations, medical professionals, and legislative champions. Together, we will keep this movement going and ensure lasting smiles for so many.
Have a question or comment? Contact us.