By Mary Fete

We have the most amazing Ensuring Lasting Smiles Act (ELSA) advocates! Our contacts on Capitol Hill tell us that the reason the bill has garnered incredible support in a short amount of time is because of our grassroots efforts. It’s because families affected by congenital anomalies bravely share their personal stories with Congress.

That’s exactly what happened again on Tuesday, June 21 when 314 advocates met with 49 U.S. Senate offices for the National Foundation for Ectodermal Dysplasias (NFED) Virtual Advocacy Day with the Senate. Their mission was to ask their senators to co-sponsor the bill and to help move it through the Senate H.E.L.P. Committee.

ELSA has tremendous momentum with the U.S. House of Representatives passing it on April 4. We have till the end of this Congressional term, Jan. 3, 2023, to get the bill signed into law.

Passionate Advocates

There are 70+ organizations also on Team ELSA with the NFED. Together, we have a unified and strong voice demanding change in Washington D.C. We are grateful to the nine which participated in this event: American Association for Dental, Oral, and Craniofacial Research; American Association for Pediatric Ophthalmology and Strabismus; American Association of Oral & Maxillofacial Surgeons; American Cleft Palate-Craniofacial Association; American Dental Association; myFace; NextGenFace; Smile Train; Soft Bones, Inc.

Virtual Advocacy Day with the Senate participants were not just families affected by ectodermal dysplasias. We were proud to have advocates affected by or representing the following congenital anomalies share their stories: Advocates affected by amelogenesis imperfecta, cleidocranial dysplasia, congenital cataracts, dentinogenesis imperfecta, epidermolysis bullosa, enamel renal syndrome, fibrous dysplasia, Nance Horan syndrome, oculo-auriculo-vertebral syndrome (HFM), and pediatric aphakia.

When individuals attend these meetings, they talk about the congenital anomaly that affects them or their patients, the challenges they face getting treatment and how insurance companies deny benefits. It can be an emotional and rewarding experience. Many tell us how empowered they feel after participating.

At the Zoom After Party, Christina Hartmeyer, who is an adult affected by hypohidrotic ectodermal dysplasia, talked about how advocating has impacted her.

“Thank you all! I’m so much more confident in sharing my story every day because of this advocacy experience!”

– Christina Hartmeyer

Jennifer Cook, who was born with a unilateral left cleft lip and palate, advocated for the first time last week. She is affiliated with Smile Train.

“First – job well done!” Jennifer said in an email to me following Hill Day. “Both Becky (Abbott) and you deserve so many thanks! Until you all, I have felt unheard for 52 years, so thank you!”

Many advocates took to social media to share with family and friends how they were using their voice for ELSA. Watch this video to see!

We recognize how difficult it is for families to have the time to be persistent in their advocacy efforts. Yet, our Family-Driven Advocacy Committee has done that for the last five years. At this Hill Day, they along with several other dedicated advocates, attended numerous additional meetings to make sure that every legislator heard about ELSA. Thank you to our tenacious co-chairs, Becky Abbott and Kevin Koser, and the committee: Julie Claeys, Christine Gottschalk, Karl Nelsen, Jen Steele and Sean Vora.

Senate Leadership Stays Strong

Senator Tammy Baldwin (D-WI) and Senator Joni Ernst (R-IA) are relentlessly working to get ELSA passed this year. Team ELSA is incredibly grateful. Each shared videos to welcome advocates to Virtual Advocacy Day with the Senate.

Senator Baldwin

Senator Ernst

Our Hill Day Sponsors

Many families, organizations and corporations stepped forward to help the NFED sponsor Virtual Advocacy Day with the Senate. We thank them for their financial support!

Next Steps

Prior to our Day with the Senate, ELSA had 40 co-sponsors plus Senator Baldwin. The goal is to increase this number. Here is what you can do right now to help get this bill passed.

  1. Check if the two senators in your state are co-sponsoring ELSA.
  2. Contact your senators who are already co-sponsoring and ask them to help move ELSA through the H.E.L.P. committee for markup. Ask them to encourage their colleagues to become co-sponsors.
  3. If your senator(s) is not yet a co-sponsor, email them and ask them to do so. Be sure and share with them the good news that the U.S. House has already passed the bill.

If you have advocated in the past and have a relationship with that Senator’s office, use their direct contact information. If you haven’t, use our easy advocacy tool to email your senator(s) today.

Email Yours Senator Now

Six Months of Action

Let me be clear: We need each and every NFED family and advocates affected by other congenital anomalies in the United States to join Team ELSA. We need you to tell your story. We have only six months to get the bill through the Senate and into law. Each month, take a small amount of time to contact your Senators.

We are incredibly close to a world where you will have health insurance benefits for the medical treatment you need. Your voice matters!  

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