The 2022 Family Conference

On July 14, our National Foundation for Ectodermal Dysplasias (NFED) family convened upon the Doubletree by Hilton in Chesterfield, Mo. We gathered again for the 2022 NFED Family Conference.

Family Conference is a hallmark of what we do at the NFED by providing education and support to the ectodermal dysplasias community. We invite our families to join us for three days of learning, connecting and having fun! And this year was no different. Conference is always special, because of the sense of connection and belonging it provides to our community. This year was a little more special because it was the first time we were able to meet since before the COVID pandemic.

Together Again

One of the most exciting things about every conference is seeing all of the smiling faces. I can’t tell you how important it is for me, and our staff, to see everyone together at this event. It reinforces why we do what we do every day. Your stories inspire us to keep moving forward and do more for our community.

Not only did we see old friends, we got to make many new ones, too! We had over 20 new families join us this year. Wow! And they were welcomed to the family with open arms. Seeing families who have been to many conferences greet, welcome and share their very personal experiences with first-timers brings tears to my eyes now, just thinking about it. We have an incredibly special community, and we are so glad each and every one of you is a part of the NFED family!

Seeing the smiles on the kids’ faces, watching families laugh in the halls, and hearing our speakers provide important information to help our families live their best lives—that has filled my heart and will continue to for months to come. Thank you so much for joining us!

Groundbreaking Research Available in the United States

It was my absolute pleasure and joy to make a special announcement at the opening session on Thursday—the EDELIFE clinical trial is open in the United States. And it’s taking place right down the road from the NFED, at Washington University in St. Louis. While the trials have been available in other European countries and the United Kingdom, we are now able to deliver the potential treatment for XLHED to pregnant mothers, here in our country, for the first time.

Before the trial, six pregnant mothers were given this protein therapy in utero, and their baby boys with XLHED were born with the ability to sweat, as well as seeing improvements to other symptoms! This is life-changing for our families, and with this trial, we will be even closer to getting the treatment to market. That means that one of the most life-threatening symptoms of XLHED can be treated before the baby boys are even born. Simply amazing!

And of course, the NFED is here to support the mothers and their families who choose to participate in the trial. We are here for you. I am here for you! If you have any questions about the trial, you can check out the EDELIFE clinical trial website or contact me at Mary@NFED.org.

Celebrating 40 Years of the NFED

On Friday night, we all joined for a celebratory dinner in honor of our birthday. And we had lots to celebrate! We raised needed funds, danced the night away and honored some individuals who have been instrumental in the NFED’s success.

The Kenneth S. Brown Research Award was presented to Maranke Koster, Ph.D., Holm Schneider, M.D., and J. Timothy Wright, DDS, M.S.

The Outstanding Service Award was presented to Thomas J. Richardson and Timothy J. Fete, Sr., M.D., MPH.

The John E. Gilster Service Through Dentistry Award was presented to Clark Stanford, DDS, Ph.D., MHA.

Dr. Standford with Mary Fete

The Geismar Volunteerism Award was awarded to the following families for their fundraising efforts:

The Nawrocki and Nelsen families for the Minnetonka 5K
The Reidenouer and Vecchini families for Nikko for NFED

The Corporate Partner Award was presented to Oracle.

We were also honored to recognize the efforts of the late Dr. Frank H. Farrington. NFED founder, Mary K. Richter, joined me on stage to share stories and cherished memories of the kind dentist, who gave so much to the NFED family. Dr. Frank will be greatly missed.

The Create-a-Smile auction during gala helped us raise additional dollars to support our mission into the future. And many attendees pledged to give their talents to the Foundation through one of the volunteer opportunities “auctioned” off. If you would like to get involved, please get in touch with the associated staff member, below:

SHARE YOUR STORY: Jodi@nfed.org

HOLD A FAMILY FUNDRAISER OR A FACEBOOK FUNDRAISER FOR THE NFED: Lea@nfed.org     

PARTICIPATE IN A RESEARCH STUDY: Becky@nfed.org

BECOME A SOCIAL MEDIA AMBASSADOR & RAISE AWARENESS: Veronica@nfed.org

BECOME AN ADVOCACY VOLUNTEER & RAISE AWARENESS FOR ELSA: Becky@nfed.org

PLAN AN NFED@HOME EVENT: Kelley@nfed.org

Thank You!

Speaking of volunteering, it took months of planning and a lot of hands to make conference happen. In addition to the NFED staff, many volunteers gave of their time to help with set up, registration, moderating, hanging with the teens, selling merchandise and raffle tickets, and working the gala.

Members of our Scientific Advisory Council generously gave of their time and expertise to lead our educational sessions, answer our families’ questions and perform dental evaluations.

Many attendees brought items for our Chance Auction, which is always a big hit with the kids, and raises funds for the NFED. Thank you for your generosity!

We are so grateful for all of the time, talent and donations everyone gave to make the 2022 NFED Family Conference a great success.

Stay Tuned…

If you weren’t able to join us in St. Louis, we will have the conference sessions available as a virtual webinar this fall. Dates and registration information will be shared to our community via email and social media.

We know the big question on everyone’s mind is, where will conference be held next year? While we still haven’t confirmed the location of the 2023 NFED Conference, it will be announced soon. And, we can’t wait to see you there, next year!

See you next year,

Mary Fete's Signature

Mary Fete, MSN, R.N., CCM
Executive Director

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