Family conference attendees standing in front of the hotel.

Chicago proved to be a sweet home for our 38th Annual Family Conference! We welcomed the third largest gathering of families affected by ectodermal dysplasias in history on July 11-13 with 435 people from seven countries attending. It was an extraordinary event filled with new friendships, “aha” moments, laughter, hugs, and even tears.

Two girls affected by ectodermal dysplasias are hugging.
Ava Nawrocki hugs her new friend, Camilia Doyle. The two girls, who look a lot alike, met in Kays’ Kids Camp.

Anyone who has been around the National Foundation for Ectodermal Dysplasias (NFED) for awhile knows that people affected by the same syndrome often share a similar appearance. It never gets old seeing two children become buddies because they recognize themselves in each other. This was the case for Keegan James and Austin Long and Ava Nawrocki and Camilia Doyle. If the only thing Family Conference accomplished was bringing these kiddos together, then the event was worth it! But, of course, we know its impact was far greater.

In Their Own Words

It’s always our goal at Conference to have our families leave feeling empowered, connected and supported. Let’s hear from the families and see if it worked!

Kenneth Herron

Lisa Schroeder, Vinesh Parekh and Sara Gilbert

Jacob and Tina Moss

Peter and Heather Murphy

Doing Their Part

It was wonderful to see so many different types of ectodermal dysplasias represented. Plus, we had 20 people who are considered “type unknown” since they have not yet received a diagnosis. Many of them hope to change that and participated in our research project with Dr. Richard Lewis.

Dr. Kathy Grange (middle) places the tissue sample taken from Diane Carlson in a tube held by Dr. Maranke Koster. The tissue samples will help Dr. Koster’s research team better understand the skin in the p63 conditions.

Seventeen individuals volunteered to have a skin biopsy taken for Dr. Maranke Koster’s study to develop a potential treatment for skin erosions in p63 syndromes. Dr. Koster ran out of tissue samples and the newly acquired samples should sustain her lab and their work for several years. We are grateful to all of these volunteers as we know having a biopsy done is not always pleasant. We appreciate their commitment!

Tim Houser administers a non-invasive test to see what sweat glands this young girl has and if they are working.

Doctoral student, Tim Houser, M.S., conducted a study to determine an effective, noninvasive way to detect sweat glands and their function. More than 81 people participated, which was awesome!

It Takes a Team

Our hard-working Family Conference Committee, led by NFED mom, Sue Kluzek, spent a year planning the perfect event for our families. From scouting a hotel large enough to accommodate our group to folding t-shirts, this group was busy and did a great job. Thank you, Sue and Jim Kluzek, Jack Kriz, and Julie Erschen Saylor. The committee was just four of the 75 strong volunteers who lent a hand to make Conference run smoothly.

Dr. Clayton Butcher from our Scientific Advisory Council met one-on-one with Heather and Brier Shupe to discuss their questions and concerns during the Ask The Experts session.

It’s especially important to recognize the doctors, dentists, and researchers from our Scientific Advisory Council who take off days from work to volunteer their time and expertise to help our families. They do not get paid! They lead workshops, meet with families one-on-one and put in long days. We can never thank them enough.

Sponsors Make it Happen

We especially thank our sponsors for their support. It takes tremendous financial resources to pull off an event of this size and caliber. Their gifts make it possible!

Now Where?

Empowering Your Voice. Connecting Your Community.

To help you plan, here is what’s happening for the next three years. In 2020, we will head to Washington D.C. for a two-day event that will be a little different than our typical conferences. It will be all about empowering and connecting. As you may know, we have until December 31, 2020 to get the Ensuring Lasting Smiles Act (ELSA) passed in Congress.

Photo of the United States Capitol Building

This bill would impact our U.S. families’ lives in a major way. It would mandate that health insurance pay for dental and medical care to restore and replace teeth affected by ectodermal dysplasias. Our vision is to empower 500 families to storm Capitol Hill with us to share their stories and explain the need for ELSA. I strongly urge you to attend!

In addition to advocating, you will have dedicated time to connect with others affected by ectodermal dysplasias. We understand the importance of learning from one another and will plan meals, social activities and other programming to enhance family connections. The educational workshops typically held at Conference will be webinars that you can access from your home! We’re calling this six webinar series, Conference from your Couch!

Photo of the St. Louis Arch

We will celebrate the NFED’s 40th Anniversary in 2021 with a traditional Family Conference in St. Louis, Missouri. In 2022, we will head west to a location to be named later.

Map of the Western United States

Till Next Time

The NFED staff loves seeing all of you at the Family Conference! We thank everyone who came and made it such a spectacular experience. Together, we are supporting you, supporting each other.

Family Conferences have something to offer every family affected by ectodermal dysplasias. If you have never gone, a world of information awaits you! If your kids are grown, you have a tremendous opportunity to share your knowledge and experience with families just starting their journey. Whichever you are, know that your NFED family will welcome you with open arms. See you in D.C. next summer!

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