The National Foundation for Ectodermal Dysplasias (NFED) recently welcomed Tara Sugiyama Potashnik as a new Advocacy State Lead for Maryland. Advocacy State Leads are volunteers who advocate for the Ensuring Lasting Smiles Act (ELSA) (S.1677/H.R.3277) and mobilize other advocates in their state.
Tara and her daughter, Keira, took action in May to create their own impromptu Advocacy Day on Capitol Hill. Read on to learn what they did and how it empowered young Keira.
Tara and Keira Go To The Hill
By Tara Sugiyama Potashnik
My daughter, Keira, and I advocate for ELSA so that children like her and impacted individuals will always be able to smile. ELSA will provide the much needed medical and dental care she and others need for their developmental growth, and so that they thrive physically and emotionally.
When Keira was diagnosed with oligodontia (she has eight missing permanent teeth) as a young child, the news could have been overwhelming. Finding the NFED and ELSA upon learning of her diagnosis gave us a way to explain to our young daughter her condition, and to present it in a way where she could embrace this aspect of herself.
Why We Advocate
Advocating for ELSA gives us an opportunity to use our voice and our story to educate policymakers and positively improve the lives of those impacted by the conditions ELSA would address. My daughter has also noticed that when children speak up on Capitol Hill, doors open and people stop to listen. So she understands that she has a unique opportunity to use her story to help improve the quality of people’s lives.
Passing legislation takes persistence, and bipartisan and bicameral support. We know ELSA has garnered such support in past Congresses. Upon reintroduction of ELSA in the new Congress in early May, we noticed that our state’s delegation had not signed on as original co-sponsors even though many have supported the legislation in the past.
We also know that our state’s delegation has changed over the years, and some may not be familiar with ELSA. The staff in each congressional office also changes over time. So we saw an opportunity to reconnect with old offices from the past, and to introduce ourselves and ELSA to the new offices and staff members. Keira brushed up the talking points she had from the NFED’s September 2023 Hill Day when she was eight years old and in second grade to reflect her personal story as a now nine-year-old from Maryland in third grade.
In addition to Keira’s talking points, we put together a packet of materials as a leave-behind, complete with a letter from Keira about her personal story and why ELSA would be so meaningful to kids like her born with oligodontia and other congenital anomalies, and a printout of the bill.
Bravery Builds Confidence
Her ask was simple: to have the Maryland delegation sign on so that kids like her would always be able to smile. She walked the office through how much a temporary tooth costs and how much screws for teeth cost, even with insurance. We had no meetings set up in advance, but we had a list of where the Maryland offices were. We hit all nine, seven representatives and two senators. We also stopped by U.S. Rep. Hakeem Jeffries’ (R-NY) office because his office was near one of the Maryland offices.
In Rep. Jamie Raskin’s (D-MD) office, they were so moved by her that what started out as an impromptu meeting in the hall with the front office led to a tour of the office and ultimately a meeting with the relevant health legislative assistant in Rep. Raskin’s office. Keira wore her ELSA shirt from 2023. She returned home exhilarated. We’ll see if anyone from Maryland signs on, but Keira can’t wait to go back up to hit the pavement to garner support for ELSA.
Keira’s Talking Points
Here were Keira’s talking points when she spoke at the legislative offices:
CO-SPONSOR THE ENSURING LASTING SMILES ACT (ELSA) S. 1677/H.R. 3277
- My name is Keira, and I am a 3rd grader from Maryland.
- Please co-sponsor ELSA so that kids like me will always be able to smile.
- I have oligodontia and was born without 8 permanent teeth.
- Teeth are expensive. A temporary tooth—a Maryland bridge—is $3,000. For me, that’s $24,000. For a permanent tooth, the screw is $7,000. So for me that is $56,000 just for the screws.
- Insurance should cover my congenital anomalies but often won’t. Please pass ELSA into law. I know you can do it.
When you share your story on the Hill, as well as in person, you help put a face to the constituents who would be positively impacted by the legislation. We’re ready for the 119th Congress to make ELSA the law of the land, and honored to be part of the effort to help reach this milestone.
Follow Keira’s Lead
If nine-year-old Keira can share her story with legislators, we all can! Are you ready to get involved? Here’s how you can help the NFED get ELSA passed.
If you have never advocated for ELSA, an easy first step is to register as an advocate and then use our easy advocacy tool to email your legislators.
But, please don’t stop there! It’s time to get creative like Tara and Keira did.
Become an Advocacy State Lead
Are you interested in being an advocacy state lead to help drive ELSA? Email me at becky@nfed.org to learn more.
Personally Connect With Your Legislative Offices
Build a relationship with your legislators or the people who work in their office. This takes some time but we have learned first hand how effective it is.
- Consider a trip to Washington D.C. and visit your legislators’ offices.
- Request an in-district meeting at your legislators’ office in your area and share your story.
- Use the directory on our website to see if your legislators are holding a Town Hall meeting in your area. If they are, plan to attend, share your story and ask them to co-sponsor ELSA.
I encourage you to use the many advocacy resources we have to write your personal story and advocate on social media, too. Every action you take helps and gets us closer to our goal. If you have questions, contact me at becky@nfed.org. I’m happy to help you.