Two parents sat across from their U.S. Senator’s legislative staff. Then they did something that made the room go quiet. They pulled out their four-year-old son’s upper denture and set it on the table.
Each denture like this costs the family about $5,000 out-of-pocket. Their insurance denied the claims. Their son colored a picture while the grown-ups talked. He is too young to know what is at stake. But he will need many sets of dentures throughout his life. Without the Ensuring Lasting Smiles Act (ELSA), each claim will likely be denied.
“I hope he knows he will not grow up alone on his journey with ectodermal dysplasia,” said NFED Executive Director Greg Klimovitz. “His NFED family is here with him every step of the way.”
Meet Us in D.C. Day
The family described above was among the 14 advocates who joined Greg and Kristin Matus-Kelso, NFED Family and Community Programs Coordinator, for “Meet Us in D.C. Day” on October 14. In one busy, warm day, the team participated in 12 legislative meetings.
We put advocates in the driver’s seat, because we know that an empowered advocate is an effective advocate. Rather than handing families a pre-packaged itinerary, we invited each participant to take ownership of their visit, with NFED staff offering support along the way. Advocates reached out directly to their Senator’s and Representative’s offices to request meetings. The NFED helped and provided travel stipends.
This approach was intentional. When advocates initiate that connection with a legislative office themselves, they become constituents building a real relationship, not just visitors with an appointment. That ownership carries into the meeting room, where advocates share their personal stories about living with ectodermal dysplasias and other congenital craniofacial anomalies with confidence and authenticity, turning individual voices into a powerful force for change for our entire community.
Meeting With Key Congressional Members
They met with key members of the U.S. Senate Committee on Health, Education, Labor, and Pensions (HELP) who are not yet ELSA co-sponsors. ELSA was assigned to this committee for review, so these voices matter a great deal.
Congress was not in session, which turned out to be a gift. The staff had more time to listen.
“Our meetings were all very positive,” Kristin said. “The staff gave us more time than usual to share stories and discuss the need for this important legislation.”
As a first-time advocate, Paul from Ohio didn’t know what to expect.
“I walked away with a whole new appreciation for what advocacy really means. I spent a lot of time simply watching, listening, and learning from all of you. I got to see firsthand what it looks like to stand up for something that matters, to tell your story, and to make sure the people making decisions understand what’s truly at stake. I may be new to this, but I believe deeply in this cause, and I’m grateful I got to stand beside people who are so passionate about making a difference.”
Many Voices, One Message
The advocates came from seven different states. They live with different types of ectodermal dysplasias and other craniofacial congenital anomalies. They came from different generations. Their stories showed the challenges NFED families face, and the strength it takes to get the medically necessary dental treatments they need.
Greg said that while family stories always move him, this time, they hit harder.
“We heard parents share that their teenager has been admitted to inpatient care three-times due to their mental health triggered by their experience with ectodermal dysplasia. One adult bravely spoke about his story of addiction and substance abuse as how he coped with bullying when he was an adolescent. He is now in recovery and a motivational speaker after a five-year incarceration sentence.”
These stories are not easy to tell. But they help lawmakers see that dental treatment is not just about teeth. It is about health, confidence, and the chance to thrive.
Greg shared, “Our advocates were kind yet forward. Humble yet unabashed about the urgency of the needed actions by their legislators. The allostatic load is becoming heavier and heavier as families navigate denied claims to their medically-necessary treatments that can quite literally change and, in some instances, save lives. The time for Congress to act is now. Hesitating to sign on as a cosponsor for this common-sense bill is not an option for their constituents who are affected by ectodermal dysplasias and other craniofacial congenital anomalies.”
The Momentum Is Building
This fall’s meetings are part of a bigger and collaborative NFED push in 2026. We know we cannot do this work alone.
American Dental Education Association (ADEA), the American Association for Dental, Oral, and Craniofacial Research (AADOCR) and the Friends of the National Institute of Dental and Craniofacial Research (FNIDCR) Advocacy Day. On May 7, six of our advocates joined oral health researchers and scientists, dental school faculty and students, and patient advocates to highlight the importance of oral health research and education with policymakers, including continued federal investment in NIDCR research as well as dental education and training programs. NFED advocates also asked for cosponsors for ELSA.
Coalition of Skin Diseases Capitol Hill Day. In May, Kristin, Sara, and Liam joined 70+ advocates from across the country to meet with legislators and advocate for patients and families affected by skin conditions.
Rare Across America. In early August, NFED joined the Rare Foundation’s Rare Across America. Some advocates took part online. Others met with legislative staff in their home districts. ELSA advocates stood alongside more than 500 rare disease advocates. Together they held 265 meetings across 47 states, Washington, DC, and Puerto Rico.
Call to Action Week. During the last week of August, our advocates sent 270 emails to 84 congressional offices in 23 states. That kept ELSA on lawmakers’ radar during their summer recess.
Dedicates Advocates Help Lead
We’re grateful to our Advocacy Committee and Advocacy State Leads who continue to provide leadership for all things ELSA.
Advocacy Committee Co-Chair Morgan Rigsby said she’s grateful for the passion and unwavering commitment our advocates and state leads bring to this work.
“Together we are moving toward a more coordinated, strategic approach that connects the voices of individuals and families affected by ectodermal dysplasias with the decision-makers who can make a difference,” Morgan said. “We’re building a stronger network of advocates, equipping them with the tools and resources to engage effectively, and focusing our efforts on meaningful policy change that improves access to care and coverage. I’m excited about the momentum we’re building and the opportunity to turn our collective voices into lasting change for the ectodermal dysplasias community.”
These Efforts Are Working!
Our goal this week is to get a majority of the U.S. House of Representatives to co-sponsor ELSA. In August, we had 177 co-sponsors. Today, we have 211. We need 218 to achieve a majority.
“What our advocates are doing is working!” Kristin said. “We encourage all advocates to keep up the great work. Help us reach majority status. While the 119th Congress is coming to an end in December, it’s not too late, and we are not giving up.”
How You Can Take Action Now
You do not need to be an expert to make a difference. Here are two easy ways to start.
1. Register as an advocate. If you have never advocated and are not sure where to begin, sign up. You will get emails with ways to take action. You will also stay up to date on everything ELSA.
2. Use our advocacy tool. Right now, you can contact your legislators on our website. Type in your name and address, and the tool writes the letter for you. It takes just a few minutes.
That young boy in D.C. sat quietly and colored while his parents shared his future with lawmakers. He should never have to wonder whether his family can afford for him to have teeth. Every email, every meeting, and every voice brings us closer to ELSA becoming law.
Have a question or comment? Contact us.