Families Raise Awareness Around the World

March 27, 2019March 28, 2019 Category: News Posted by Jodi Edgar Reinhardt

Our community worldwide united online in February for Ectodermal Dysplasias Awareness Month! Our goal this year was to raise awareness about the symptoms, its impact on teeth and need for the Ensuring Lasting Smiles Act to get coverage for treatment. And you helped us do that!

28 Posts in 28 Days

Our families were rock stars in sharing our daily educational posts throughout February. Thanks to everyone who shared them. On Facebook alone, we reached more than 700,000 people! Many families took an extra step and posted their individual insight for each daily fact. These personalized shares helped their friends and families learn more about how ectodermal dysplasia affects them.

Kristin Matus-Kelso shared the daily posts. Even when the post was about a different syndrome than the one that affects her daughter, she found a way to connect her experience.

Super Smiles Photo Gallery

Families from around the world sent in photos showing us their beautiful smiles. You can see all of them in our gallery.

Advocacy Week

We spent the last week of the month raising awareness on Capitol Hill.

The Abbotts visited with Sen. Baldwin and celebrated he

The Abbott family attended the Congressional Caucus Briefing on rare diseases and met with legislators about ELSA.

Mary Fete spoke at the AADR and NIDCR Day training to discuss the importance of funding for the NIDRC and why its relevant and important for families with ectodermal dysplasias.

Our youngest advocates made 9 Hill visits on Rare Disease Day to talk about ELSA.

Families advocated for ELSA with staff from the HELP committee in the Senate.

Families celebrated Sen. Tammy Baldwins birthday with her and had cupcakes!

Becky Abbott represented the NFED at the American Academy of Dermatology annual meeting.

Sharing information with thousands of dermatologists about ectodermal dysplasias.

It was great awareness to be a part of this convention and share information about ectodermal dysplasias.

Educating Dental Hygienists

Jen and Alli Steele spoke at a dental hygiene pathology class at Des Moines Area Community College. This was the fourth year the mom and daughter duo educated students. Alli, 13, talked about how ectodermal dysplasia affects her daily life. She asked the students to get to know their patients and remember they are people. Her mom, Jen, shared about how ectodermal dysplasia can also affect digestive issues and saliva. She also talked about the Ensuring Lasting Smiles Act and asked students to advocate for the federal bill.

Allison Steele explains to students the best way to talk to kids like her when they are in the dental chair.

Raising Dollars, Too!

We fell slightly short of our goal to raise $28,000 in 28 days but our families did a fantastic job. Twenty-five families hosted a Facebook fundraiser and raised $15,500. The Reed/Walker families raffled a Fishing Trip which made $6,200. Two friends of Levi Hawken in New Zealand raffled a piece of art and donated approximately $975 USD.

Sarah Gilbert held a Facebook Fundraiser in February and raised $800!

Connect With Your NFED Family Beyond Awareness Month

You have two opportunities this summer to network with other families affected by ectodermal dysplasias this summer. Attend the 38^th annual Family Conference, Sweet Home Chicago, July 11-13, for three days of education and support. Or, join us for Ectodermal Dysplasias Advocacy Day on Capitol Hill, July 16-17, in Washington D.C. We will unite to raise our voices about the need for the Ensuring Lasting Smiles Act.