It’s extraordinary what our advocates and staff have accomplished in just two months since the Ensuring Lasting Smiles Act (ELSA) (S.754/H.R.1916) was re-introduced in the 117th Congress!

Before our Virtual Advocacy Day on Capitol Hill on Wednesday, April 28, 32 senators and 187 representatives were ELSA co-sponsors. Since Hill Day, 18 representatives have joined the ranks. Also, additional legislators have verbally indicated they are signing on and we expect the numbers to grow by next week.

This means that we have almost half of Congress co-sponsoring ELSA – after just two months! It’s fantastic.

How 2021 Hill Day Looked

Virtual Advocacy Day on Capitol Hill was our fifth since we started our advocacy effort in 2016. This year, we held the event in April rather than June or July so that we would create momentum for the bill earlier in this Congressional session.

Four hundred fourteen advocates from 48 states and Puerto Rico met with their legislators and/or their staff via 243 Zoom meetings to share their stories and to ask them to support ELSA. We welcomed these families, professionals and advocates from other organizations supporting ELSA.

Mary Fete, NFED executive director, was thrilled with how well this year’s Virtual Advocacy Day went.

Nothing beats being on Capitol Hill in person! But, advocates loved being able to see each other as they met in teams in their multiple Zoom calls. Even virtually, the excitement and energy were palpable! We are grateful to every advocate who took the time to participate all day and who had the courage to speak up for themselves and their family.

– Mary Fete

Advocates passionately shared their struggles with having a congenital anomaly and the challenges they face getting the medically necessary care they need. Kris Steele, an NFED dad from Iowa, shared his Hill Day experience.

We had the pleasure of joining the call with Senator [Jon] Tester (MT), and got to hear the courageous way that two families shared their stories in such a real and effective way.  Sen Tester interrupted after the second story and said he was signing on right away…’You had me with the kids.’

– Kris Steele

Other legislators, such as Congressman Gus Bilirakis (R-FL), the co-chair of the Rare Disease Caucus, and Senator Josh Hawley (R-MO), finally signed on as co-sponsors after Hill Day. Our advocates have talked to them numerous times for years. Kudos to our advocates who persisted!

It was powerful to have people of all ages participate, from little kids to grandparents. This year’s Hill Day was the second time that Kaitlyn Squibb participated. A young adult affected by ectodermal dysplasia, she has been actively raising awareness for ELSA since last year’s Hill Day by posting on her social media and using her story to make a difference.

“I loved advocating with someone else from New Hampshire!” Kaitlyn said.

Leading the Charge

The day kicked off with ELSA leaders sharing their commitment to getting the bill passed. Mary cheered on advocates in her Facebook Live.  

We continue to be grateful to ELSA’s four bill leads. Each participated in Hill Day by recording a message for advocates.

Senator Tammy Baldwin (D-WI)

Senator Joni Ernst (R-IA)

Congresswoman Anna Eshoo (D-CA-18)

Congressman Drew Ferguson (R-GA-3)

We are proud to have these senators and representatives’ leadership!

Behind the scenes, our Family-Driven Advocacy Committee and staff spend countless hours reaching out to advocates, creating strategies and working with legislative offices. We cannot thank them enough for making Virtual Advocacy Day a huge success.

Social Media Contest Winners

This year, we hosted our first social media contest to encourage families to show their advocacy spirit! Congratulations to Virginia Higgins and Maddie Adams who are the two winners. Each received a $100 Amazon card. Thanks to everyone who participated!

Congressman Responds with Personal Visit

Many people who could not who could not be in meetings chose to email their legislators and ask for their support. NFED mom, Kathryn Schlernitzauer wrote Representative Andy Barr (R-KY) and shared her daughter story of being born affected by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. Instead of getting the standard reply letter, the Schlernitzauers received a personal visit from their Congressman. He told them in person that he’s co-sponsoring. Watch their incredible story!

Let’s Keep the Momentum Going!

The Schlernitzauers and the other amazing advocates are all living proof that family stories are making all the difference in getting legislators to sign on. If you have not yet advocated this year, we invite you to share your story with Congress.

Start by checking to see if your two senators and one representative are on board. Click on the links below to find out.

Check To See If Your Senator Is A Co-Sponsor Check To See If Your Representative Is A Co-Sponsor

It’s never too late to get involved. If your Legislator isn’t a co-sponsor, use our easy advocacy tool to share your story today.

Take Action

If you participated in Hill Day, don’t forget to follow up with the legislative staffers you met with and reach out to them monthly with updates.

ELSA’s off to an extraordinary start in the 117th Congress! Let’s keep working together to move it faster through Congress. Let’s get ELSA passed – this year!

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