Amazing!  Wonderful!  Informative! Fantastic!  Life-Changing! Educational!  Empowering! Fun! Fascinating!

What word best describes our week in Washington D.C.?  They all do!  For me, it is hard to really describe the impact that week made on our entire community.

Our families were on their way to meeting with their legislators on Capitol Hill on Ectodermal Dysplasias Advocacy Day.

Monumental Day

We started on Capitol Hill for our first Ectodermal Dysplasias Advocacy Day and what a day that was! One hundred and seventy five individuals made more than 140 visits to legislators, their staffers and various committees. It was simply a life-changing, empowering event of which to be a part.

Never in my life have I experienced such a powerful event. Seeing families march across Capital campus, sharing their individual stories, but advocating for the entire ectodermal dysplasia community. You could feel the energy the moment we step foot on Capitol Hill. It was simply amazing!

We know that we are just beginning on this journey and we need EVERYONE’S help with this. But, it was a great kick off to advocating for legislation to guarantee appropriate treatment for all congenital anomalies.  Watch for more information to come soon!

Susan Gibbons (far right) shows dermatology residents at Grand Rounds how ankyloblepharon-ectodermal dysplasia-clefting (AEC) syndrome has affected her granddaughter, Erin’s, nails.

Educating Docs

On Thursday morning, we educated medical students, residents, faculty and other health professionals on the ectodermal dysplasias. Five brave families volunteered to participate in Grand Rounds at Inova Center for Personalized Medicine. These families along with five professionals educated 70 medical professionals.

This was such a wonderful opportunity to educate young physicians who will soon be going out to communities and to also educate physician educators to continue to spread the knowledge. A big thank you to Drs. Scott Norton, Robert Silverman and Elaine Siegfried for all of their help organizing and supporting this event.

When you have the largest gathering in history, the parking lot is the only place big enough to take a photo!

Largest Gathering in History

The 36th Annual Family Conference also opened that day. Wow! What a great conference! Do you know that we had 468 individuals, 45 new families and 180 children at this conference?  It was our biggest conference ever!  I just don’t know if it can get any better. We made new friends and connected with old friends, all coming together as a community.

What was your favorite part? Mine was spending time with all of you! I’d love for you to write yours in the comments below. It was so gratifying to see all of the families and kiddos hanging out, having fun and sharing tips and stories.

These two gals became friends at Kays’ Kids Camp. They are showing off the coffee filter creation and slime they made.

How touching was it to watch the kids make new friends and have fun in Kays’ Kids Camp? It simply filled my heart with such happiness to see all of the energy and laughter in those rooms. The conference was full of good times with lots of laughter, some tears, but definitely lots of love with our NFED family.

We invest significant funds to make this conference meet your needs. There were many educational, support and socials that hopefully you found very empowering and valuable. We are grateful to the Joliet Woman’s Club, the Louis J. and June E. Kay Foundation, Hubbard Broadcasting Foundation, The Louis & Gladyce Foster Family Foundation, Straumann, GeneDx and Mildren Design Group, P.C. for their sponsorship of the Family Conference.

Watch ABC News Segment Filmed at Family Conference

We tried something new in the hope that we educate more families. We taped five educational sessions so that families who couldn’t attend can benefit from the knowledge shared. This is our goal: to use Family Conference as a “spring board” to reach even more families, develop educational content for our website and family stories for our blogs.  We want this event to truly be an “entire community event” whether or not families are able to attend.

On behalf of the entire staff, I thank you for sharing this extraordinary week with us in Washington D.C. last month. We returned from this conference energized and ready to work with you to accomplish great things.

View Photos from Family Conference

Plans are already underway for next year’s Family Conference in Portland, Oregon. Join us in the Pacific Northeast, as it is going to be another phenomenal conference!

And of course a big thank you to all of our volunteers, especially our Scientific Advisory Council. It’s pretty phenomenal to have a team of experts like we do who take days off from their jobs and donate their time to help our families. We can’t put a price tag on the value of their expertise.

Call us. We would love to hear from you. Lots of hugs and love to you and your families!

In a nut shell, in ONE week:

  • We advocated on Capitol Hill.
  • We educated health care professionals.
  • Hundreds of families learned new information and developed support systems.
  • We created new materials for all families and for our website

Not to mention, we held two research conferences the following week!  More on this to follow soon.

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