How My Daughter and I Brought ELSA Advocacy Home to Utah

Read how a mom and her daughter from Utah worked hard to share their story and talk with lawmakers about the Ensuring Lasting Smiles Act. Their journey shows how being kind, not giving up, and meeting in person can make a big difference for families like theirs and for ELSA. She walks you through step by step what she did to be successful.

How a Mom and Daughter Held Their Own Impromptu Day on the Hill

When nine-year-old Keira and her mom, Tara, realized Maryland lawmakers hadn’t signed on to support the Ensuring Lasting Smiles Act (ELSA), they took action. With no meetings scheduled, they hit Capitol Hill, shared Keira’s powerful story, and made a big impact. Read about their bravery and how lawmakers took notice. Plus, find out creative ways you can advocate for ELSA.

ELSA Has Been Reintroduced in the 119th Congress!

All of our advocacy, dedication and background work have finally paid off! We are excited to announce that the Ensuring Lasting Smiles Act (ELSA) was reintroduced on Thursday, May 8th in both chambers of the 119th U.S. Congress. House Bill: H.R.3277 Senate Bill: S.1677 We are extremely thankful for our dedicated bill leads: Senator Tammy…

How You Can Help ReIntroduce ELSA in Congress

Co-chairs of the National Foundation for Ectodermal Dysplasias (NFED) Family Advocacy Committee give an update on the reintroduction of the Ensuring Lasting Smiles Act (ELSA) in Congress.

Get the Latest News on the Ensuring Lasting Smiles Act

It may seem like the Ensuring Lasting Smiles Act (ELSA) has stalled in the 118th Congress. However, we are taking a different approach. Find out what’s happening with this critical legislation and what you can do to help.

Advocacy 101: Make Your Story Known For ELSA

Make Your Story Known For ELSA Dealing with a rare condition like ectodermal dysplasia can be very challenging, especially when it comes to navigating the healthcare system. The National Foundation for Ectodermal Dysplasias (NFED) is here to help you get the necessary care. One effective way to achieve this is through legislative advocacy and sharing…

ELSA Advocates Raise Their Voices in DC at NFED Hill Day

The air felt electric on September 19th as 172 advocates marched to the steps of the United States Capitol Building in Washington D.C.., ready to advocate for the Ensuring Lasting Smiles Act (ELSA). Read about this amazing day and what’s happening next for this important legislation.