Approximately three hundred brave advocates from 46 states shared their personal stories with U.S. legislators at this year’s National Foundation for Ectodermal Dysplasias (NFED) Virtual Advocacy Day on Capitol Hill on March 30. I heard story after story from families who were constantly battling insurance companies. They talked about the medically necessary surgeries and ongoing treatments they or their child has needed, the extreme costs of these procedures, and the frustration that comes with being constantly denied coverage by insurance plans.

Parents talked about choosing between their children’s health and their children’s future. No parent should have to make this choice!

Each story was unique, but they shared a common thread: ELSA must be passed!  Every advocate’s quality of life would be greatly improved by the passage of the Ensuring Lasting Smiles Act (ELSA) (S.754/HR.1916).

The stories I heard in the meetings were absolutely inspiring but also so heartbreaking to hear what families have been through. Yet, here they are on calls with legislators to share their stories and struggles, being brave, and pouring their heart out.”

Becky Abbott, NFED Director, Treatment and Research Advocacy and Co-Chair of the Family-Driven Advocacy Committee.

These very stories are the reason why ELSA has advanced relatively quickly in Congress for such a young bill.

“We have heard over and over again from our legislators that the reason we have been successful with moving ELSA forward is because of our advocates,” Abbott said. “They have made all the difference in the world and they are the sole reason why ELSA has been so successful so far—moving through the U.S. House of Representatives and going to a vote on Monday, April 4.”

The NFED Board of Directors (BOD) have allocated significant resources to this initiative, both in terms of financial and staff resources.  Along with the BOD, NFED leadership has identified ELSA as a high priority for the Foundation. We are determined to get ELSA passed in the 117th Congress.

The House to Vote on ELSA

It is crucial that we get ELSA passed by the end of the 117th Congress which is January 3, 2023. The timing of this year’s Hill Day was critical, coming just days before the House vote.

The House will begin discussions on all bills, which are up for a vote today, at 2 p.m., with voting to follow. Please keep in mind that plans are fluid so we don’t know the exact timing the vote on ELSA will happen. We will keep you apprised of the outcome via email and social media. You can watch the proceedings here.

We implore our families and supporters to contact their representatives immediately today and ask them to vote yes! You can use our easy advocacy tool now.

Our Day on the Hill

This year’s event marked the fifth NFED Advocacy Day on Capitol Hill. Advocates from the NFED, including staff and seven other organizations participated in 200 virtual meetings. I remember being together on the steps on Capitol Hill and I have a picture hanging behind my desk. This picture inspires and motivates me to continue this fight! I am honored to work with all of our families and advocates over the past several years as we continue to advocate to get ELSA passed. Kicking off the day on Wednesday was a true honor.

We especially thank 15 “super advocates” who participated in 9-15 meetings to make sure all key legislators heard our message. We partied on Zoom when the day ended! Advocates shared their experiences from the day. First-timers talked about their initial anxiety and not knowing what to expect but were amazed by how powerful the day was!

All Our Thanks

First and foremost, we thank YOU, our advocates, and state leads! You are the reason that ELSA is going to a vote today in the House. Your stories and advocating are making a difference! There is such power when families come together to share their stories and demand change.

ELSA Bill Leads

We are incredibly fortunate to have amazing bill leads in Senator Tammy Baldwin (D-WI), Senator Joni Ernst (R-IA), Representative Anna Eshoo (D-CA-18) and Representative Drew Ferguson (R-GA-3). Several shared a special message with advocates on Hill Day and what inspires them to get this legislation passed.

Our Co-Sponsors

ELSA has incredible bi-partisan support in both the House and the Senate. Did you know that going into Hill Day, we had 310 co-sponsors plus Rep. Eshoo and 40 in the Senate along with Sen. Baldwin? ELSA was placed on the consensus calendar because we reached supermajority status in the House, which is why it will be put to a vote on the House floor today.

After our Day on Capitol Hill, we had five new co-sponsors in the U.S. House of Representatives sign on in support of ELSA and hope to add additional co-sponsors in the U.S. Senate soon. We heard so many positive responses from the legislators.

The NFED Staff

I am grateful to our NFED staff that spent countless hours planning Hill Day, calling advocates to ensure they had their schedules, sending out communications, raising money, and meeting with legislators. Their passion to help our families is unwavering.

Family-Driven Advocacy Committee

The Family-Driven Advocacy Committee has been instrumental in enlisting support from other advocates and helping lead strategies to advance ELSA. The co-chairs, Becky Abbott and Kevin Koser, have dedicated their lives for the past five years to this cause. Thank you as well to Julie Claeys, Christine Gottschalk, Karl Nelsen, Jen Steele, and Sean Vora.

Karl and Sammi Nelsen met with their Minnesota legislators.

Supporting Organizations

The beauty of ELSA is that it applies to all congenital anomalies. Working as a team with other organizations has given us strength in numbers. It’s an honor to partner with them. In addition to ectodermal dysplasias, Hill Day advocates represented the following conditions: amelogenesis imperfecta, Apert syndrome, cleft lip/palate, cleidocranial dysplasia, congenital cataracts, craniofacial microsomia, dentinogenesis imperfecta, enamel-renal syndrome, fibrous dysplasia, hypodontia / oligodontia, hypophosphatasia and SYNGAP1.

Sixty organizations are fighting for ELSA alongside the NFED and we thank several of them who joined us on the Hill: CCD Smiles, International Pemphigus and Pemphigoid Foundation, March of Dimes, My Face, Soft Bones, Inc., Smile Train and Syngap1 Foundation.

Sponsors

No event like this is possible without funding. We are grateful to these sponsors for underwriting our 2022 Virtual Advocacy Day.

We like to think positively that we won’t need another Hill Day next year because ELSA will have been signed into law this year! But whatever happens in Washington, you have our commitment that we will keep fighting so that you have the benefits you need for you and your family. Let’s do it together!

One comment on “Brave ELSA Advocates Pour Out Their Hearts to Legislators”

  1. 1
    Clara Kikta on May 10, 2022

    Many members of our family have been affected by ectodermal dysphasia including our son (now 61) and our great-grandson.

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